WASHINGTON — The current body of evidence on dementia care does not reflect the experiences of diverse populations, including people of different races, ethnicities, ages, genders, sexual orientations, and abilities, says a new report from the National Academies of Sciences, Engineering, and Medicine. The report assesses the quality of the existing evidence about care for people living with dementia and their caregivers and recommends interventions for broad dissemination and implementation. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward also provides a blueprint to advance the field, and guide future research and actions toward better dementia care.

It is critical to build a strong evidence base on dementia care interventions, not only to better support patients and their care partners and caregivers but also to guide clinical care, insurance coverage decisions, and public health recommendations, the report says.

There are between 3.7 million and 5.8 million people living with dementia in the United States, according to recent estimates. Many of them desire support in living with purpose, maintaining meaningful relationships, continuing the activities they enjoy, and remaining independent for as long as possible. To live well with dementia — at all stages of the disease — people need care, services, and supports that reflect their values and preferences, build on their strengths and abilities, and promote well-being. These may include help with medication use, paying bills, avoiding falls, and managing daily personal care needs, as well as support in activities that are socially, physically, and cognitively stimulating.

Existing research on dementia care interventions has several limitations, the report says. It mainly consists of short-term studies with small sample sizes, making it challenging to determine which interventions are effective. In addition, studies tend to focus on individual interventions, and more research is needed on interventions 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). Funders of research 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.

“People living with dementia, care partners, and caregivers deserve services, care, and supports that work and meet their unique needs,” said Eric B. Larson, senior investigator, Kaiser Permanente Washington Health Research Institute, and chair of the committee that wrote the report. “It’s encouraging that several dementia care interventions have shown early promise — which is all the more reason to continue to develop a more robust, inclusive, and actionable evidence base. The committee identifies several new methods and approaches to move the field forward. And while specific interventions clearly need additional research, there are steps that individuals, communities, and organizations can take right now to improve dementia care.”

The committee found two types of interventions that are supported by low-strength evidence of benefit, based on a systematic review by the Agency for Healthcare Research and Quality (AHRQ): 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. Agencies within the U.S. Department of Health and Human Services should work with state agencies, community organizations, and health care systems to implement these interventions with ongoing evaluation to expand the evidence base, the report recommends. These efforts should also work to 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.

Collaborative care models and REACH II are not the only types of interventions that should be pursued, the report emphasizes. Although there is increasing recognition of the needs of individuals living with dementia, as well as dementia caregiver burnout, notable research gaps exist in this area. Unpaid caregiving for dementia, typically delivered by a family member, had an estimated annual monetary value of $50 billion to $106 billion as of 2010. While many interventions target unpaid care partners and caregivers, few focus on training and supporting paid direct care workers. The report also highlights the need to generate more high-quality evidence on interventions such as late-stage care interventions, respite care (temporary breaks from caregiving), and social supports, including peer groups for people living with dementia and their caregivers.

The report proposes a blueprint for future research, which includes methodological improvements and approaches that can complement randomized control trials. It calls for the National Institutes of Health (NIH) to prioritize research that promotes equity, diversity, and inclusion to reflect the experiences of the range of populations and communities. NIH should require adherence to the NIH Revitalization Act of 1993, and assess disparities in access and outcomes, says the report. In addition, NIH, AHRQ, the Centers for Medicare & Medicaid Services, and the Administration for Community Living should consider key factors — such as space and workforce capabilities — to assess the real-world effectiveness of various interventions.

The committee also acknowledged the profound impact the COVID-19 pandemic has had on 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 (challenges to study recruitment), implementation (fewer face-to-face interactions), and dissemination of best practices.

The study — undertaken by the Committee on Care Interventions for Individuals with Dementia and Their Caregivers — was sponsored by the National Institute on Aging. The National Academies are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln.

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