When Nick Williams' mother, Susan, moved in with him and his wife, Yaya, in 2023, the couple thought she just needed help getting back on her feet.
Instead, things took a turn for the worse. The woman Nick remembered as kind to everyone began saying hurtful things that upset the whole family. She made up stories every day. Yaya would argue back, accusing her 83-year-old mother-in-law of lying.
The struggles went on for more than a year. Then an urgent health problem sent Susan to a local hospital, which wasn't equipped to treat her, so she ended up being transferred UC Davis Medical Center.
What happened next turned out to be life-altering.
After she was treated, a UC Davis Health doctor confirmed Susan had dementia.
That led the family to the Healthy Aging Clinic, where someone asked Nick and Yaya — who were struggling with the emotional toll of dementia at home — a question they had never heard before: How were they doing?
"I think right away we felt a lot better after just talking for the first time," Williams said.
Until then, they had never thought of themselves as caregivers. "I probably would have told you I don't want to be a caregiver," Williams said. But reality set in when the clinic gave them that title and, with it, a connection to resources and help for families like theirs.
A struggle shared by millions
The Williams are far from alone. About 63 million Americans, nearly 1 in 4 adults, provide ongoing care for a loved one with a complex medical condition or a disability and nearly 13 million care for someone with dementia. Whatever the diagnosis, many caregivers face the same hurdle to find help.
Anna Satake leads the Caregiver Consultation Service at the UC Davis Health Healthy Aging Clinic. She is a geriatric clinical nurse specialist and assistant clinical professor at the Betty Irene Moore School of Nursing at UC Davis. She has conducted about 800 consultation visits in the past two and a half years, providing coaching and education to guide families through dementia care.
When a patient with dementia is referred to the service by their UC Davis Health provider, Satake meets with the family members who care for them. Depending on the needs of the family and the changing symptoms of the person with dementia, consultations may occur once or every couple of months.
Many tell her they aren't sure if a loved one's behavior stems from dementia or done on purpose. That doubt can lead to arguments. Satake explains how the disease affects thinking and behavior, so family members can change how they react.
Sometimes caregivers seem to view these resources as something they should save for when things get much worse, rather than recognizing that using them earlier could help prevent them from becoming overwhelmed.-Anna Satake, Caregiver counselor
Caregivers see what others miss
People with dementia can't always articulate what daily life is really like.
"A person living with dementia may tell their provider that everything is going well, that they are eating and sleeping fine, or that they are taking their medications as prescribed," Satake said. "They may genuinely believe this to be true but not remember or recognize the changes that have occurred."
Caregivers fill those gaps. In their ongoing visits with Satake, they often share details that never come up at a doctor's appointment, which makes them an important part of the care team.
Focusing on what patients can control
Patients in the clinic get that same close attention. Brittany Stagg, a nurse practitioner, leads the Dementia Care Program. Many of her patients come to her soon after a diagnosis, when entire families are devastated.
The disease can't be stopped. But Stagg helps patients and caregivers understand what they can still control, like sleep, exercise, nutrition and medications. She also walks families through the disease's progression, so they know what lies ahead and make plans for the future.
"There's things that you can't change, but there are some things that you can," she said. "I'm a firm believer in preparation."
Sometimes the fix is simple: Better sleep at night and more activity during the day can ease the confusion and agitation that often build in the late afternoon. Initial visits last an hour, with follow-ups every three to four months. That timeline helps Stagg spot problems early.
How to get caregiver support at UC Davis Health
The Caregiver Consultation Service at the UC Davis Health Healthy Aging Clinic offers education, guidance and ongoing support to family members and friends caring for someone with dementia.
Visits last one hour and can take place by phone, video or in person. Caregivers can attend alone or with family members or friends who help with care. Most return every couple of months to learn new strategies as their loved one's needs change.
The service is open to caregivers of patients with a dementia diagnosis who see a UC Davis Health dementia care nurse practitioner, geriatrician, cognitive neurologist, geriatric psychiatrist or neuropsychologist. A referral from one of these providers is needed, so ask your family member's provider if the service is right for your family.
"Because we're asking different types of questions, about how the disease itself impacts these other facets of care, it changes the question just enough where we can get the right answers," Stagg said.
When caregivers need additional help, Stagg refers them to Satake, and the two build on the other's work. Stagg's goal is to help patients "live as long as possible at the highest level that they can."
Don't wait for a crisis
Caregiving takes a toll. An estimated 59% of dementia caregivers report feeling high to very high emotional stress and one in five is in fair or poor health directly attributable to their caregiving.
The strain builds gradually, Satake said, so caregivers often overlook their own warning signs, such as trouble sleeping or losing patience with a loved one.
"Sometimes caregivers seem to view these resources as something they should save for when things get much worse, rather than recognizing that using them earlier could help prevent them from becoming overwhelmed," she said.
Satake urges them to start with small tasks, like asking a friend to sit with their loved one for an hour. She tells families not to think of asking for help as a burden. "Instead, think of it as an opportunity to allow the people who love you to actually love you."
Help that changed everything
Back at the Williams home, life is more peaceful now.
Williams' mother spends about 20 hours a week at an adult day center, thanks to a clinic employee's referral and a counselor who eased Williams' skepticism.
"We would never have really done any of that without the counselors at UC Davis," he said.
Although his mother's dementia continues to progress, the couple sees her differently now. Yaya no longer takes her mother-in-law's anger personally. Instead, she remains close to her. They participate in activities together.
Williams' advice for other families: Don't sit on the help you're offered.
"When UC Davis gives you a list of a lot of recommendations, you should read it right away," he said. "If I could go back in time, I think I would have gone through that list immediately."
