Caring Connections

Fifteen years ago, Cindy and Dudley Goss noticed something was off. Dudley had started missing small deadlines and details at work — unusual for the wealth advisor known for his financial expertise.

Dudley Goss, now 77, a certified financial planner in Trabuco Canyon, Calif., who had served in the U.S. Navy, had begun having difficulty remembering and completing the tasks required for his high-level leadership position.

“Dudley was always a high-functioning and an extremely talented and quick-witted individual,” Cindy Goss says.

After the couple consulted with a local hospital, a battery of tests revealed minor deficits in Dudley Goss’ cognitive functioning consistent with early-onset dementia. The couple believes his participation in a three-year clinical trial at the hospital stalled the progression of his memory loss, but at the end of the trial the treatment failed to receive approval from the Food and Drug Administration. As they looked ahead, they wanted more options — and more support. With no new drugs on the market at that time, Cindy Goss reached out to the Keck School of Medicine of USC.

“I knew that USC has one of the best [neurology] programs in the country,” she says. “And as a teaching hospital, [it] has access to first-time trials.” After much research, Cindy Goss reached out to Professor of Neurology and Raymond and Betty McCarron Chair in Neurology Helena Chui.

Chui helped Dudley Goss enroll in a USC program involving Leqembi, a medication that received FDA approval in 2023 as the first drug to slow progression of Alzheimer’s disease. Dudley received semimonthly infusions for the first year and half of the program and is now on a maintenance dose once a month.

“It was a match made in heaven because Dr. Chui and Dudley have developed a very special relationship,” Cindy Goss says. “Their relationship is highly personal, mutually respectful, and Dr. Chui has shown great compassion and support in so many ways.”

This type of compassionate care is emblematic of USC’s approach to the physician-patient relationship. USC practitioners are nationwide leaders in providing empathetic care to individuals with Alzheimer’s disease, as well as to the caregivers who join their loved ones on this unpredictable journey.

Impactful donations drive research

Keck School of Medicine has one of the largest neuroscience programs focused on Alzheimer’s disease, with centers across the university dedicated to accelerating research and discovery.

Impactful gifts make this research possible: Most recently, the USC Epstein Family Alzheimer’s Therapeutic Research Institute at Keck School of Medicine was renamed in honor of a transformative gift from longtime USC supporter Daniel J. Epstein ’62; his wife, Phyllis; and their family.

In 2022, the family provided support for the founding of the Epstein Family Alzheimer’s Research Collaboration between USC and the University of California, San Diego, to more quickly advance research focused on discovering effective treatments.

Because this complex and progressive disease affects millions, Keck School of Medicine Dean Carolyn Meltzer says it attracts many researchers and practitioners to USC to meet the challenge.

Chui, the director of the Alzheimer’s Disease Research Center (ADRC) at USC, is one of those researchers. The center studies genetic risk factors, including apolipoprotein E4 (APOE4), and how to intervene and prevent the disease from worsening before symptoms appear.

Her colleague Paul Aisen, professor of neurology and director of the USC Epstein Family Alzheimer’s Therapeutic Research Institute (ATRI), leads clinical trials targeting individuals with early biological signs of the disease.

“If we can treat in that window, we may delay or prevent Alzheimer’s,” Chui says.

Focus on drug discovery

Donanemab is another treatment drug that the FDA approved in 2024. Like Leqembi, it aims to slow the progression of Alzheimer’s disease. Although neither drug can reverse memory loss, both represent a shift in Alzheimer’s treatment from merely managing symptoms to attempting to slow the disease itself.

Chui believes the most effective treatment for Alzheimer’s patients would be a cocktail tailored to the individual, depending on what stage of the disease they have.

Chui hopes such a drug could be developed within the next five years, but the reluctance of patients to join clinical trials is one of the biggest challenges to developing new drugs. Likewise, once drugs are developed, the United States’ fragmented health insurance landscape is no match for their cost, with Medicare as the only insurance that will pay for most treatments.

As loved ones join patients on this journey, Chui says they need education on how to think about what the basic, most important things are to quality of life.

“In caregiving, for each stage, it’s a little different,” she says. “You have to think about what a person can do to enjoy the present moment.”

Planning for the road ahead

Keck Medicine of USC licensed clinical social workers help doctors like Chui guide patients through the complex care landscape. Social worker John Danner suggests resources and develops systems that support individuals with dementia from the early stages, when they can still participate in their own care and express their wishes, through later stages, when the disease limits their ability to manage daily life independently.

What sets Keck Medicine apart, Danner says, is that practitioners are dedicated to joining patients and their caregivers on their journey with the disease from diagnosis to the care marathon, through death and bereavement.

“Most hospitals have a discharge planner, one discussion, a list and a goodbye,” Danner says. “USC provides a future care planner.”

This means deeper consultations that aim to better understand patient and caregiver areas of need, followed by an evolving care plan that adds levels of support and encouragement as the disease progresses.

“I work primarily with caregivers to set up systems that will continue to function all the way to the end and keep adding as we go,” says Danner, who has worked with Los Angeles County and USC since 1972. “It really becomes quite a task to get the right setups going before they’re needed.”

Part of that planning may involve Danner helping eligible patients enroll in Medi-Cal, where community-based adult services such as in-home care, protective supervision and out-of-the-home adult day health care may be covered by insurance. Many of these services reflect a common goal that Danner shares with most of his patients: keeping a person at home with their regular routines for as long as possible.

The unseen costs of dementia

Part of that future planning must take into consideration the financial impact of living with and caring for someone with Alzheimer’s disease.

A person with Medicare coverage but no supplemental health insurance can expect to pay about 20% of costs out of pocket for expenses related to diagnosing and treating Alzheimer’s, such as imaging tests, intravenous infusion medications and follow-up monitoring and treatments, says Professor Julie Zissimopoulos of the USC Price School of Public Policy.

The economic toll often goes beyond medications and therapies.

“Most of the burden lands on families through quality-of-life loss, through the hours of care that family members provide, and through the forgone earnings of care partners,” Zissimopoulos explains.

Zissimopoulos, chair of the department of health policy and management at USC Price and co-director of the Aging and Cognition Program at the USC Schaeffer Center for Health Policy & Economics, is a principal investigator for the United States Cost of Dementia Project.

The research team — who produces the annual estimate of the cost of dementia in the United States — estimated a national cost of $781 billion in 2025, which includes informal care, quality of life lost, medical and long-term care, and forgone earnings both of care partners and patients.

“The costs that go unmeasured are among the most devastating: how dementia erodes a family’s earnings, upends retirement plans and sets off a chain of financial consequences that are challenging, but important, to quantify,” Zissimopoulos says.

Without a more affordable long-term care system or treatment to prevent the disease or slow its progression, Zissimopoulos says the economic impact will only continue to increase as the U.S. population ages.

The Cost of Dementia Project aims to give the government, clinicians, people living with the disease and their care partners the information they need for care and financial planning and to better target scarce resources. “The goal is to ease the enormous burden dementia places on families and society, and better information is how we get there,” Zissimopoulos adds.

Caring for the caregiver

That burden often involves a financial, mental and physical strain on unpaid and unsupported caregivers.

“People who care for someone with dementia have the highest rates of financial strain, stress, depression and other negative health consequences compared to all other types of caregivers,” says Donna Benton, associate research professor at the USC Leonard Davis School of Gerontology.

Benton, also director of the USC Family Caregiver Support Center, is a longtime advocate for family caregivers. Her center serves multiple organizations by finding innovative ways to provide support for unpaid family caregivers and the individuals they care for.

In L.A. County, Benton and her colleagues test programs to address caregiver needs in areas such as financial strain, access to resources, elder abuse, cultural differences and psychological stress.

“We don’t have a lot of safety-net programs designed to help very low-income people or middle-income people,” Benton says. “We’re finding that caregivers are taking on more responsibility for the full care of their relative — and they’re less likely to ask for help.”

In 2022, the USC Family Caregiver Support Center collaborated with other California support agencies and family caregivers to create the California Coalition on Family Caregiving. The coalition — which consists of both social service agencies and family caregivers — advocates for statewide policies and services that support unpaid caregivers and the people they care for. Some of the first issues the coalition tackled were better paid family leave for working caregivers and a change to the limited definition at the federal level of who qualifies as a caregiver.

USC’s Center for Advancing Caregiver Financial and Workplace Security — where Benton also serves as a principal investigator — recently launched a new podcast series, The Care Economy, that, according to its website, explores “today’s most pressing and often overlooked economic issues: unpaid family caregiving.”

Benton says USC has been a nationwide leader in caregiver support and research, including training physicians and other medical professionals to be aware of caregiver issues in its programs.

“A lot of the research on the emotional tolls of caregiving were done in collaboration with professors in the USC School of Gerontology,” she says. She adds that USC programs, such as the Caregiver Resource Center, are now models for the services provided nationwide. “USC has been part of that mix the whole time.”

Taking it day by day

In the decade since Dudley Goss was first diagnosed with Alzheimer’s, Cindy says he has participated in at least three Alzheimer’s-related studies at USC that have nothing to do with direct benefit to his health, in service of science.

“I felt that even though my condition was progressing, I really wanted to help other people who struggle with this disease to find other treatments or ideally a cure,” Dudley Goss says.

Since his initial diagnosis, Dudley Goss now deals with aphasia, a condition that makes it hard for him to recall words, in addition to trouble remembering names, dates and important milestones. Cindy Goss now handles the pair’s financial decisions, doctor appointments and social calendar. For Dudley Goss, giving up driving was the biggest adjustment. “It’s the lack of independence,” he says, “and not being able to help share the load that bothers me the most.”

For Cindy Goss, the challenge of managing an active business and the demands of daily living is also profound. After 34 years of marriage, the couple attributes their ongoing ability to travel extensively and volunteer in their community and church to their Christian faith and the relationships they have cultivated.

Throughout this journey, the Gosses say they are grateful to have USC as a partner. “We want to highlight the great care that Dudley has received at USC, and to educate others that need support for this complex and disruptive medical condition,” Cindy Goss says.