Final recommendations on ways to reduce disparities in dementia, which were developed during a stakeholder roundtable sponsored by the Milken Institute Alliance to Improve Dementia Care, will be released in the first quarter of 2021, Nora Super, executive director of the Alliance and senior director of the Milken Institute Center for the Future of Aging, said Tuesday.

Super and a panel of experts discussed the effects of social determinants on brain health, the role of health and long-term care systems in reducing dementia care disparities, and strategies to extend dementia-supportive networks into communities of color during the Milken Institute’s 2020 Future of Health Summit. Although the final recommendations are not ready, Super and the panelists discussed key lessons learned.

“What we’re really trying to do is look at these disparities, especially for African Americans and Hispanics, and what can change either through public policy or employer policies, but also in healthcare and long-term care systems,” Super said. 

The preliminary recommendations include increasing policy-relevant research related to the potential economic impact, targeting brain health awareness campaigns, building a dementia-capable and culturally competent workforce, developing core components of collaborative dementia care models, supporting family caregivers and, and supporting and promoting bipartisan federal and state policy efforts.

Options

When looking at disparity issues in long-term care, Super said that two other areas of focus for the Alliance are brain health awareness and better training the workforce in dementia care, and reducing cultural differences in support for family caregivers. 

The Alliance, she said, is trying to raise awareness about the different home- and community-based options available, including group homes, assisted living communities and services to help those caring for someone with dementia.

Katie Brandt, director of caregiver support services and public relations at Mass General Hospital Frontotemporal Disorders Unit, said that the financial effect of Alzheimer’s disease or related dementias can be devastating and is not equally distributed. 

“We can’t leave it that the only option is to impoverish yourself to become eligible for skilled nursing care,” Brandt said. “Individuals need support at every stage.”

Aging concerns

Cognitive decline and Alzheimer’s disease was the top health concern in a Bank of America survey, cutting across all generations and outpacing cancer, heart disease and other comorbidities combined, said Kai Walker, head of inclusion transformation, retirement and personal wealth solutions at Bank of America.

Financial planning conversations formerly centered on products, services and returns, he said. Today, Walker added, those conversations are more about having a financial plan in place to manage caregiving responsibilities or deal with their own diagnosis.

Employees increasingly are turning to their employers to provide benefits and resources to help with personal needs around healthcare and caregiving, he added. Employers have, for the most part, answered the call with more robust employee assistance programs, he said, but more needs to be done. 

“In terms of providing that support, workplaces can be a tremendous source for resources and support to alleviate that burden,” Walker said, adding that employers are offering benefits similar to maternity leave to care for a loved one, and flex options to shift to part-time work.

Education is key

Lenise Cummings-Vaughn from Washington University in St. Louis said that education is the key to bridging some of the current disparities in dementia care. Responses to patients can be colored by different interpretations of information, which in turn may affect whether a clinician seeks assistance, orders testing or refers someone to a specialist.

“Listening to patients and their caregivers is incredibly important,” Cummings-Vaughn said. “We found that responding or listening to patients and caregivers when they have a concern about memory and thinking, that is powerful.”

She referenced the “4Ms Framework of an Age-Friendly Health System,” which resulted from an age-friendly health systems initiative from the John A. Hartford Foundation and Institute for Healthcare Improvement. The framework presents a guide for improving the care of older adults and decreasing disparities in underserved and minority communities by helping caregivers to respond, implement and evaluate patients for mood problems and memory, including cognitive impairment, dementia and delirium. 

“A standardized approach leads to an unbiased approach to care,” Cummings-Vaughn said.