XinQi Dong adds to recommendations on how to improve dementia caregiving, reduce disparities and expand future research

Not enough is known about caring for people living with dementia especially for minority populations, according to the National Academies of Sciences, Engineering, and Medicine in a newly released report.

“While we have some data suggesting the effectiveness of the way we care for older adults with dementia, we were stuck by how much we don’t know, especially when it comes to underserved populations,” said XinQi Dong, director of the Rutgers Institute for Health, Health Care Policy and Aging Research. “We also have much to learn about potential unintended harms of caregiving interventions, including issues such as elder abuse, neglect and exploitation.”

In the report, Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward, written by a committee of experts including Dong, the inaugural Henry Rutgers Distinguished Professor of Population Health Sciences, the committee evaluated existing dementia care interventions reviewed by the Agency for Healthcare Research and Quality and input from people living with Alzheimer’s disease and related dementias and those who care for them.

As many as 5.8 million Americans are living with Alzheimer’s disease and related dementias and millions more are providing care to someone with dementia, but care interventions are complex and many people’s needs go unmet, particularly racial and ethnic minorities, the committee found.

The report concluded that the care interventions that may be the most beneficial are collaborative and bring together multidisciplinary care teams that offer both medical and psychosocial care, and provide support for family, partners and caregivers providing care to those with Alzheimer’s disease and other dementias.

The committee recommended that decisions about providing care – whether by individuals or organizations – using fundamental principles and components of care, including person-centeredness, justice, inclusivity, support for activities of daily living and coordination of care.

“Although further research is needed, our committee found that we have promising evidence on what types of interventions may be helpful,” Dong said. “So much of caregiving is individualized, and families and organizations can leverage these resources to make decisions and support care for those with dementia.”

Dong is a population health epidemiologist and geriatrician, and has published extensively on violence prevention, elder justice and healthy aging. He is a leader in advancing population health issues in under-represented communities.