Pittsburgh, Emory Nursing Schools Team Up to Study Dementia Care

Around the world, more than 55 million people have dementia, according to the World Health Organization. Dementia ranks as the seventh-leading cause of death among older adults, with nearly 10 million new cases every year.

In the U.S., around 5.8 million people live with dementia, according to the U.S. Centers for Disease Control and Prevention (CDC), with that number expected to eclipse 14 million by 2060. Women and people of color are disproportionately affected.

Today, 80% of people with dementia receive care in their homes. Many of their caregivers are family and friends. In fact, more than 16 million Americans are unpaid caregivers of people with dementia. And they clock over 17 billion hours of care annually. Dementia caregivers, who are often undertrained, face unique challenges.

Now, two nursing schools are joining forces to tackle some of these challenges.

With a $1.4 million grant from the National Institute on Aging of the National Institutes of Health (NIH), the University of Pittsburgh School of Nursing in Pennsylvania and Emory University’s Nell Hodgson Woodruff School of Nursing in Georgia will study and ultimately help support informal caregiving networks. These are collaborative caregiving arrangements that spread responsibilities across multiple parties, instead of a sole caregiver.

Who are the caregivers taking care of people with dementia? Around 1 in 3 is over the age of 65, according to the CDC. A quarter are caring for aging parents while also raising a child under the age of 18. And two-thirds are women. Many are also related to the patient.

Compared with other conditions, dementia often requires longer-term care.

In fact, 57% of family caregivers for people with dementia provide care for more than four years, the CDC reports. The length of caregiving represents one major challenge for dementia caregivers. These caregivers are at a higher risk for anxiety and depression than other caregivers. Not only that, dementia caregivers often struggle to take care of themselves, leading to a lower quality of life.

Burnout is a significant problem for caregivers, just as it is for nurses and other healthcare workers. Caregivers often experience high levels of stress and face physical challenges including a weakened immune system and disproportionate cognitive decline.

As the number of people with dementia grows, caregivers will face even more pressure. For years, researchers have been aware of the urgency of supporting dementia caregivers. In a 2011 review of dementia caregiving outcomes, scholars concluded that the need for dementia caregiver support “will inevitably accompany the vast increase in size of the older adult population in coming decades.”

How can health professionals mitigate the challenges dementia caregivers face? For one, our definition of “dementia caregiver” may need to expand. While previous research has focused on the primary caregiver, a network of care providers often supports people with dementia.

Understanding how those networks function — and how to improve their care — represents an important step in dementia care.

Rather than focusing on primary caregivers, the new study will cast a broader net.

Professors Mi-Kyung Song, Ph.D., RN, FAAN, of Emory, and Annette DeVito Dabbs, Ph.D., RN, ACNS-BC, FAAN, of the University of Pittsburgh, will lead the team conducting the new NIH-funded research.

“[I]n both clinical and research settings, we typically do not assess who is involved in caregiving other than the primary caregiver, and what role these individuals play,” Song said in a statement.

Song brings a wealth of experience working on caregiver networks, including a 2022 study that looked beyond primary caregivers to assess caregiver teams. The study found that larger, more closely connected networks resulted in fewer hospitalizations for patients.

The next breakthrough in caregiver support may come through technology.

A 2023 systematic review found that digital health interventions can effectively support family caregivers. These interventions worked by “improving caregiver psychological health, self-efficacy, caregiving skills, quality of life, social support, and problem-coping abilities.”

Customizing digital tools for dementia caregiving may similarly help dementia caregivers. Recent research by DeVito Dabbs has investigated the use of smartphone applications in healthcare. The current NIH grant will build on that prior research by investigating how caregiver networks function using CareNet, an interactive digital tool.

“Our hope and expectation is that this tool will help provide a more comprehensive perspective of informal caregiving to help healthcare professionals as they guide patients and caregivers,” DeVito Dabbs said in a statement. “The ultimate goal is to support and provide the best care possible for older adults with dementia and their caregivers.”