ALLENSPARK, Colo. — Margarita Bianco stood before a room filled with dementia caregivers and described the moment she realized Alzheimer’s disease was consuming more than her husband’s memory.
It was also beginning to consume her.
Bianco, a professor at the University of Colorado Denver, had planned to care for her husband, Tim, at home. But as his condition progressed, the work became relentless — keeping him from wandering, monitoring his drinking, stopping him from trying to cook, and managing the daily responsibilities he could no longer handle.
One day, exhausted and angry, she screamed at him when he would not get out of bed.
“I realized even while I was screaming at him, I wasn’t angry at him,” Bianco said. “I was enraged at the disease.”
The experience helped her recognize that their arrangement was no longer sustainable. Her husband now lives in a memory care community.
Bianco shared their story Wednesday morning during the third annual “Come to the Summit” dementia symposium at the Highlands Camp and Retreat Center in Allenspark. More than 150 people attended the event, held during World Alzheimer’s Month.
The symposium, sponsored by the Allenspark Community Church, Harmony Senior Referrals, Cardinal Crossroads, Kapsak and Estes Law, Mahan Group, eXp Realty, and the
Estes Dementia Day Center, brought together a physician who studies spirituality and the brain, a molecular biologist examining Alzheimer’s detection and treatment, and a caregiver confronting the disease inside her own marriage.
Their presentations approached dementia from different directions but returned to a common theme: A person’s life remains larger than the disease.
“Joy is not a luxury for us,” Bianco said. “It’s absolutely a survival strategy.”
Bianco is a professor in the School of Education and Human Development at CU Denver and founder of Pathways2Teaching, which allows high school students to earn college credit while exploring education-related careers.
But on Wednesday, she spoke emotionally as a wife and caregiver, pausing several times to wipe away tears and regain her composure.
Her husband was diagnosed with mild cognitive impairment in 2020 after several years of warning signs, including difficulty finding his way home and retrieving words. Bianco said his decline has been rapid and steady.
As his memory faded, their relationship changed.
“You stop being the wife in the way you were, and you become something else,” she said. “I’m his manager. I’m his memory. I’m his advocate.”
Bianco said Alzheimer’s produces a distinctive form of grief because caregivers mourn someone who is still alive. Her husband sometimes no longer remembers her name or recognizes her when she visits.
She nevertheless searches for moments of connection and humor.
During one visit, she leaned over to kiss him and noticed him pull away. When she asked whether he knew who she was, he said no.
“Well, that’s a good damn thing you didn’t just do that,” she told him.
They laughed, and then he kissed her.
“You grieve someone who’s still here,” Bianco said. “You grieve that person every day in a different way.”
She encouraged caregivers to preserve identities and interests beyond caregiving. For Bianco, that has meant adopting rescue dogs, fostering puppies, traveling, making mixed-media art and continuing the academic work she loves.
“Finding joy doesn’t mean pretending everything is OK,” she said. “It means refusing to wither away. It means deciding that the disease might get him, but it doesn’t have to consume both of us.”
Her advice to caregivers was heartfelt and drawn from her lived experience: give yourself grace, let go of guilt, forgive yourself, focus on what you can control, and build communities of support. She urged caregivers to protect time with friends, faith groups, and support groups as carefully as they would protect a medical appointment.
For Bianco, living alongside Alzheimer’s means making room for grief without surrendering everything else.
“Don’t carry the weight of the whole world,” she said. “Carry only today.”
“I carry love, and I carry grief at the same time,” she said.
Spirituality and the brain
Andrew Newberg, a professor and director of research at the Marcus Institute of Integrative Health at Thomas Jefferson University and Hospital in Philadelphia, explored how prayer, meditation, and other spiritual practices affect the brain.
Newberg is a pioneer in neurotheology, the study of the relationship between brain function and religious or spiritual experiences. His research has included brain scans of people engaged in prayer, meditation, rituals and trance states.
Those practices do not activate a single “spiritual” region, he said. They engage systems throughout the brain and body that govern concentration, language, emotion, social connection, stress and a person’s sense of self.
Newberg said research has associated prayer and meditation with lower anxiety and stress and, in some studies, improvements in mood and cognitive function.
The value of a practice, however, depends on the individual. A familiar prayer, hymn, walk in nature, or piece of music may carry more meaning than an unfamiliar exercise imposed as therapy.
“If they love doing certain hymns, if they love doing certain prayers, if they love taking walks in nature, keep getting them to do all of those things that have meaning to them,” Newberg said.
That individual history becomes especially important when caring for someone who can no longer clearly explain what provides comfort. A person with dementia may be unable to follow a conversation yet still remember the words and melody of a familiar hymn, he said.
Newberg cautioned that meditation is not automatically appropriate for everyone. Intensive practices that diminish a person’s sense of self could worsen confusion or anxiety in some people with neurological or psychiatric conditions. Care should be tailored to the person, he said, and may include a combination of medical treatment, exercise, nutrition, sleep and meaningful spiritual or creative activity.
Earlier clues in the blood
Tom Blumenthal, the Anna and John J. Sie Professor in Genomics at the University of Colorado School of Medicine, focused on the biology of Alzheimer’s disease and efforts to identify it earlier.
Blumenthal is the executive director of the Linda Crnic Institute for Down Syndrome. He also has personal experience as a caregiver.
He discussed blood tests that measure phosphorylated tau 217, or p-tau217, a blood-based protein biomarker that helps detect brain changes associated with Alzheimer’s disease.
Such testing may help doctors distinguish Alzheimer’s from other causes of dementia without relying solely on more invasive or expensive procedures such as spinal taps or PET scans.
The Food and Drug Administration has cleared a blood test that uses a ratio of p-tau217 and beta-amyloid for adults 55 and older who show signs or symptoms of cognitive decline.
Blumenthal said biomarker testing holds promise because Alzheimer’s-related changes can begin years before memory problems become apparent. Detecting those changes earlier could eventually allow treatment before extensive damage occurs.
He emphasized, however, that researchers still do not know whether starting treatment before symptoms appear can stop the disease.
Newer antibody medications can remove much of the amyloid plaque from the brain and modestly slow cognitive decline in some people with early Alzheimer’s, Blumenthal said.
However, they do not cure the disease, can cause side effects and may be costly or burdensome to administer.
“The future is now,” he said of the testing advances, but many questions remain — including who should be tested, when testing should begin and how often it should be repeated.
Learning about an elevated risk also carries emotional and practical consequences, he said. Results could produce anxiety, affect life planning or raise privacy and insurance concerns.
“Knowledge isn’t always good,” Blumenthal said. “It’s also good to be aware that knowing it may not be entirely good for you.”
He also pointed to one low-cost step supported by research: physical activity. Exercise cannot guarantee that someone will avoid Alzheimer’s disease, but it can support overall and brain health.
One audience member asked how much exercise was recommended. Blumenthal’s recommendation was pragmatic: Choose an amount of exercise that is realistic enough to continue.
As an 83-year-old, Blumenthal said running up Longs Peak probably wasn’t something he would choose to do, but seven minutes of exercise daily at his age might be the right amount.
Music without rules
The symposium also included a dementia-friendly GLOW concert by musicians from the Boulder Symphony and Music Academy.
GLOW — “Grow, Life, Open, Wonder” — is an interactive concert program created for people living with dementia, neurodegenerative conditions, and cognitive or developmental disabilities, along with their families and caregivers.
Unlike a traditional concert, the program welcomes movement and vocalization. A board-certified music therapist guides activities and gives participants opportunities to play instruments and engage directly with the music.
The performance brought the symposium’s themes together: Scientific understanding matters, but so do music, community, spirituality, laughter, and the moments of recognition that can remain after words and memories begin to disappear.
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