Ask An Expert: Dementia and Caregiving with Regina Shih

May 1, 2024
Regins Shih, PhD

By Shelby Crosier

The U.S. population is currently older than it has ever been, and by 2050 adults aged 65 and older are projected to make up almost a quarter of the country’s population. As people age, they may experience unique health concerns, including higher risks of certain chronic conditions like heart disease and dementia, which may require additional caregiving support.

Caregiving tasks are often placed on friends and family members who provide care that is typically unpaid, and the number of these family caregivers has increased in recent years. Regina Shih, PhD, professor of epidemiology, has dedicated her career to research about aging, dementia, and caregiving. Here, she discusses what everyone needs to know about caring for older adults.

What sort of support do adults typically need as they age, particularly if they have dementia?

Aging happens to everyone and getting the right support at the right time is so critical to aging well. This support may include getting help with transportation, being socially connected, and staying physically active.

Older adults with dementia might need more intensive care, and it’s important for that care to be person-centered. That means that their values and choices are guiding all their care decisions and quality of life goals. It also means respecting their independence, autonomy, and life experiences. People with dementia in the early stages might need help with managing finances or medications, remembering names or how to drive to places, and addressing anxiety that can come with a diagnosis.

As dementia progresses, someone living with dementia might have more complex medical needs and need help with preparing meals and feeding, walking, going to the bathroom, and bathing. Those kinds of supports are what we call long-term care, which can be delivered in the home, community, or in a facility like a skilled nursing facility. The desire to age-in-place [stay in your own home as you age] is driving increases in a specific type of long-term care called home- and community-based services, which is what my research focuses on. 

What are a few current major needs or priorities in dementia care?

One of the top concerns in my mind is delivering high-quality and affordable long-term care. Our nation is in a crisis because the primary source of care is family caregivers, and they are generally under-recognized and under-appreciated. At the same time, we have a major shortage of direct care workers—like personal care aides, home health aides, and certified nursing assistants. Given the size of the aging baby boomer population, these are some of the fastest growing jobs in America. Making sure that we have a pipeline of workers who feel confident and are adequately compensated to deliver dementia-competent care is a major priority for public health.

How does your research address those needs, as well as equity issues?

I’ve been moving my research from identifying gender, racial/ethnic, educational, and neighborhood differences in risk for dementia to looking at how structural and discriminatory practices drive those disparities, how they evolve, and how inequities can be eliminated. For example, I started a new project funded by the National Institute on Aging (NIA) with colleagues at RAND and Johns Hopkins Bloomberg School of Public Health to look at redlining effects on cognitive health. I also received NIA funding for a research network at Emory that is building equity principles into all our activities—from growing and diversifying the group of scientists doing this research, to developing data tools to try to advance equity in how we measure and look at outcomes of home- and community-based services for people with dementia.  I also have a new project starting at Emory with the National Alliance for Caregiving to support diverse family caregivers through an Administration for Community Living grant, in which we’re centering the voices of family caregivers in all that we do.

What does everyone need to know about supporting people with dementia?

Dementia can be a hugely challenging condition to care for. Dementia touches so many systems of care—health care, social services, and public health. There are exciting developments, yet there is still much work to be done for those systems to come together.

For example, there is unfortunately still so much stigma around dementia that public health practitioners could do a better job of addressing. Addressing that stigma would help people get earlier diagnoses, prompting better health care intervention and treatment options. Early diagnoses can also help social service systems prepare for service demands. Equitable access to education about prevention opportunities, awareness about screening, early diagnosis, and treatment have to be done in concert with all of these systems to remove disparities in outcomes for people with dementia and their caregivers.