Dementia is not just a medical term, it is also an unknown journey. Dr. Ada Mui, a professor at the Columbia University School of Social Work, shared with humor and wisdom how she found direction in caregiving amidst conflict and loss, drawing from her dual roles as a scholar and the wife of a dementia patient.
On August 20, 2025, the Alzheimer’s Care Services hosted its second online Chinese salon, led by Professor Mui. With over half a century of academic and practical experience, she shared insights on adjusting mindset and practical approaches to dealing with Alzheimer’s patients, whom she affectionately refers to as “brain buddies,” combining personal experiences with professional research.
At the start of the salon, Professor Mui used a relatable metaphor to explain the progression of dementia: “Dementia, or 失智 in Chinese, is like boarding a D train, moving from one stop to another. Some stops are longer, some pass by quickly. We are comrades, cheering each other along the way. If you become a caregiver first, it’s like boarding the train early, being able to inform others of what to expect and learn together on the journey.”
Professor Mui highlighted that in Alzheimer’s families, women often bear the primary caregiving responsibility, with 80% of caregivers being female, reflecting the significant burden women carry in family care.
She also emphasized that the degeneration of Alzheimer’s does not have a fixed timetable; each individual’s progress and symptoms vary. For example, bladder and bowel incontinence may occur in the early or later stages, or during the transition from mid to late stages.
“Many people think the early stage is easier, but it’s actually trickier. Because in the early stages, patients can still speak, often argue, criticize, causing emotional stress for family members. In the mid-stages, although speech diminishes and conflicts lessen, daily functions gradually decline, such as the inability to eat, bladder and bowel incontinence, requiring more care.”
One audience member shared that his wife often experiences delusions, thinking someone is calling to berate her. Professor Mui advised: “Don’t argue with your brain buddy about the truth, instead accompany through conversation.”
She gave an example: “If she says someone is scolding her, just ask gently, ‘How did they scold you? That person is unreasonable!’ Catch her words like playing table tennis. Stay in sync with her.”
After providing moderate companionship, gently redirect attention to activities like walking, eating, or going to the supermarket. She humorously remarked, “Otherwise, she might talk for two hours, a whole day, or even a week, and you will be worn out. So, learn how to switch trains, from the express D Train to the local R Train. Problem solved.”
She emphasized that the focus of caregiving is not to “conquer the disease,” but to “care for a person.” Therefore, she refers to patients as “brain buddies,” reminding everyone to treat dementia patients with dignity and humanity.
The process of dementia is not about sudden blankness in the mind but a gradual stripping away. “Patients are not completely unaware; they still have pride and can feel ashamed or powerless. So, compliment them; it costs nothing but can make them happy.”
She cautioned against treating brain buddies like children: “Be good, stop being noisy.” It’s not about right or wrong but about the person using their remaining abilities to navigate life. “They might have had ten fingers to work with in the past, and now only have two, but they are still trying. That’s their way.”
Oral health is also a significant issue. An audience member mentioned her husband’s inflamed teeth, affecting brain health and causing difficulty in eating. Professor Mui reminded that oral bacteria can directly reach the brain, accelerating degeneration, thus the need to find dementia-friendly dentists.
Loss of autonomy and privacy is often the most difficult challenge for dementia patients, with bathing being a particularly tricky part of caregiving. One audience member shared that her husband reacts strongly during baths, resisting as if being assaulted: “I am already gentle with him, but he hits me like a boxer. He curses when he touches water, making it unbearable. He used to be gentle, but now he’s become aggressive and difficult. It’s really tough to accept this ‘coach’ again.”
In response, Professor Mui expressed understanding of the bitterness behind such situations, saying, “It’s truly beyond words to describe the anguish.” She suggested not rushing to undress during bathing assistance, but to proceed “step by step, slowly.” “Don’t argue, don’t demand with ‘should.’ You can let your brain buddy hold the showerhead, creating a sense of ‘autonomy’; or you can hold it together with them, making it a form of collaboration rather than coercion.” She even added, “If some patients feel embarrassed about nudity, even without undressing, you can still clean their body.”
Another listener shared that her mother sometimes refuses to speak and communicates only through gestures. She and her sister insist on her speaking before helping, is that right?
Professor Mui explained that language degeneration comes in three forms: not understanding, wanting to speak but unable to, or being unable to form complete sentences. “Since she has lost that ability, it’s no longer necessary to demand that she must speak, as it would only bring more frustration.”
She suggested that family members can understand needs through a “mind-reading” approach, for instance, when the patient says “I want, I want,” using multiple choices to aid in understanding and expression: “Do you want to eat or drink soup? Now or in fifteen minutes?”
She gave the example that sometimes when patients say they want snacks from the food cart, they may just not remember the names of the dishes. “At such times, family members can respond humorously: ‘Sure, let’s start with dumplings, others will be served hot in a while.’ This way, conflicts are avoided, and the patient’s dignity is maintained.
Regarding caregiving, Professor Mui also shared her experience of vision deterioration over twenty years ago. She suffered from tunnel vision, only able to see a small central area, similar to viewing the world through a telescope. Doctors had predicted she would go blind within seven years, yet she has lived over twenty years since.
Initially, she was fearful of crossing the street, especially avoiding sudden turning vehicles, feeling like “one misstep and it’s all over.” At school, she couldn’t even pass through revolving doors because she couldn’t distinguish between the glass and the openings. “I told my students: if you see the teacher stuck in the door, come rescue me!”
During that time, she continued teaching, leading church services, and organizing the weekly “Thirty-Person Dinner” for international students. The heavy workload overwhelmed her at times, but the vision loss changed her perspective.
“I suddenly thought, being able to cook is a blessing. Because if I can’t see, I can’t do anything.” This realization has sustained her over two decades of living with the condition. Despite her narrowing vision, she chooses to be grateful. “The window isn’t completely shut yet; I can still see all of you. That’s grace.”
Dementia is not an individual’s journey but a family’s, even a societal lesson to be learned together. Amidst struggles and tears, caregivers learn to be creative, find humor, and practice patience and acceptance. Just like Professor Mui said, “Our brain buddies are regressing, but they’re still human, with dignity and emotions. What we can do is accompany, protect, and find learning and growth in the process.”
She shared a life anecdote: her husband forbids turning on the heater in winter and the air conditioner in summer. So, on hot summer nights, she covers him with a thick blanket, feeling like being in a sauna. covertly sticking her foot out for ventilation, her husband immediately asks, “Why did you put your foot out?” She smartly responds, “To sunbathe.” Her husband says, “There is no sun at midnight.” She follows up with a praise, “Exactly, no sun, you’re right, very smart.” This humor and praise defuse potential conflicts and soften their relationship.
Professor Mui concluded by saying, “We are classmates and comrades.” Dementia caregiving presents unexpected situations every day, requiring caregivers to maintain a learning mindset to avoid being overwhelmed. In gerontology, lifelong learning leads to health. Learning can cover health care, caring for brain buddies, interactions with children, or even self-improvement.
“This is life; we laugh, we cry, but most importantly, we can still learn using our minds.” Professor Mui sees challenges as opportunities for growth — learning humility from fear, gratitude from loss.
“We can’t stop the regress, but we can allow them to live with dignity and happiness in the limited time they have.”