Strong evidence on dementia care interventions is lacking, and what exists does not reflect the experiences of diverse populations, according to a new report from the National Academies of Sciences, Engineering, and Medicine (NASEM). Most existing community-based programs don’t offer clear proof they work to address the care and services needed by those with the disease or their caregivers, the report found.

Members of the ad hoc NASEM committee assessed the current body of evidence on care interventions for those living with dementia and their caregivers to help guide decision-making about which interventions should be broadly disseminated and implemented and to model for future actions and research. A systematic review found only two programs had any evidence of benefit, and those were only supported by low-strength evidence: Collaborative Care models, which integrate medical and psychosocial care, and Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II, an intervention aimed at supporting family caregivers.

However, even low-strength evidence is helpful because it does show a way forward, according to Eric Larson, a senior investigator at the Kaiser Permanente Washington Health Research Institute and chair of the committee that wrote the report

“People living with dementia, care partners, and caregivers deserve services, care, and supports that work and meet their unique needs,” said Larson.“People need interventions that reflect their values and preferences, build on their strengths and abilities, promote well-being, and address needs that evolve as cognitive impairment deepens.” The report recommended that government agencies work with states, community organizations and health systems to implement these interventions with ongoing evaluation to expand the evidence base.

Existing research on appropriate interventions has several limitations, and mainly consists of short-term studies with small sample sizes, making it challenging to determine which interventions are effective. A more substantial evidence base would better support patients, their care partners and caregivers and guide clinical care, insurance coverage decisions and public health recommendations, according to Larson. The report identified several new methods and approaches to move the field forward.

An estimated 5 million people in the U.S. live with dementia, according to the Alzheimer’s Association. Some 21.6 million caregivers — mainly family and friends — provide paid and unpaid care ranging from help with medication use, paying bills, avoiding falls and managing daily personal care needs. They also provide support for activities that are socially, physically, and cognitively stimulating. Unpaid caregivers provide some 18.6 billion hours of care, valued at $244 billion.

Additional evidence is needed on what interventions work at the community level (care protocols, dementia villages), policy level (paid family leave policies, payment policies, and transportation policies), and societal level (public awareness campaigns), according to committee members who participated in a February 23 webinar. Research funders should also ensure a balance of short-term and long-term studies and assess interventions in real-world settings where people receive care, including the home and long-term care facilities. These efforts should also identify workforce needs, test payment models, and ensure adaptations for specific racial and ethnic groups, LGBTQ populations and low-resource settings, including rural and tribal areas.

“We had to really grapple with the complexity of the systems and deal with this at multiple levels and look at the interactions between these different levels, and the fact that the people living with dementia, their care partners and their caregivers are not homogeneous.” said committee member Robyn Stone, senior vice president for research at LeadingAge.

Collaborative care and REACH II are not the only types of interventions that should be pursued, the report emphasized. “I think it is necessary to be able to understand whether intervention can be effective in different subpopulations as well,” said XinQi Dong, M.D., MPH, director of the Institute for Health, Health Care Policy and Aging Research at Rutgers University, and a member of the committee.

“Much of the focus of dementia research has been intervention to the individual level. I think we really need to think about what are the larger interventions, perhaps for a broader system community and policy levels,” he said during the webinar.

Although there is increasing recognition of the needs of individuals living with dementia and dementia caregiver burnout, notable research gaps exist in this area. While existing interventions often target unpaid care partners and caregivers, few focus on training and supporting paid direct-care workers. The report also highlighted the need to generate more high-quality evidence on interventions for late-stage care, respite care and social supports, such as peer groups for people living with dementia and their caregivers.

The committee members also acknowledged the profound impact the COVID-19 pandemic has had on the quality of life for people living with dementia and their caregivers, particularly among communities of color and disadvantaged populations. In the months and years to come, it will have implications for research, such as challenges to study recruitment, implementation, fewer face-to-face interactions and dissemination of best practices.

Here are some questions to answer in your reporting:

• How are local elder care and social service organizations helping those with dementia and their caregivers during the pandemic?
• What resources are available at the individual and community levels?
• Will city or state budget problems affect existing programs, such as respite care?
• How are family caregivers coping?

Liz Seegert is an independent health journalist based in New York’s Hudson Valley, who writes about caregiving, dementia, access to care, nursing homes and policy in her role as AHCJ’s Health Beat Leader for Aging. Seegert helps provide context for reporting on this multidimensional issue with story posts, tip sheets, analysis, data and one-on-one interviews with aging experts.