Advancing Care and Caregiving Research

While significant advances in treating and preventing Alzheimer’s and related dementias have been made recently, there continues to be a critical need to provide comprehensive care for those currently living with dementia as well as increase supports for their care partners. NIH currently funds a broad portfolio of care and caregiver research, from developing new research tools and measures to understanding the economic impact of dementia to supporting more than 220 trials of care and caregiving interventions.

In March 2023, NIH held the 2023 Dementia Care and Caregiving Research Summit , one of three rotating summits (including one on Alzheimer’s and another on Alzheimer’s-related dementias). The goal of the event was to review research progress, highlight innovative and promising research, and identify unmet needs with input from the broader research community, persons living with dementia and their care partners, providers of health care and supports to persons living with dementia, and other stakeholders. Informed by the 2023 summit, NIH established eight new research implementation milestones to help guide future research activities in dementia care and caregiving.

In addition to the summit, the views and perspectives of persons living with dementia and their care partners are gathered via other forums to inform NIH research activities. For example, the NIH-funded IMbedded Pragmatic Alzheimer’s disease and Alzheimer’s-Related Dementias Clinical Trials (IMPACT) Collaboratory works to build the nation’s capacity to conduct pragmatic trials; that is, clinical trials of nondrug interventions where people already live and work, including in skilled nursing facilities (“nursing homes”). In 2021, the IMPACT Collaboratory established the Lived Experience Panel , comprised of people living with cognitive symptoms or caring for persons living with dementia. This panel helps inform research priorities and identify challenges that are important to the broader community of people living with dementia and their care partners. The panel issued a report (PDF, 530K) in 2023 outlining key issues in health equity for dementia care and research. This report is already being used to inform the design of upcoming pragmatic trials. Further, NIH hosted the ADRD Research Roundtable in 2023, which brought together nonprofit leaders, persons with lived experience, and NIH staff to discuss gaps and opportunities in Alzheimer’s-related dementias research.

Moreover, quality care depends on several factors, including the training and expertise of care providers. NIH continues to fund research exploring the impact of training initiatives for care providers, including health care workers. For example, a small study of nurse care managers found that providing these important care providers with telephone-based dementia care training improved several aspects of care . Compared to those without such training, trained nurse care managers were more likely to engage in a range of positive care behaviors. For example, trained managers engaged in more conversations with family caregivers about safety, including identifying backup caregivers; initiated more conversations about advanced care planning; engaged in more discussions regarding family caregiver wellbeing; and increased their identification of behavioral symptoms (e.g., depression, agitation), which can enable subsequent management of these symptoms.

Researchers also found that, for persons living with dementia residing in skilled nursing facilities, certain characteristics of these nursing facilities may affect quality of care . More specifically, nursing homes where more than 90% of residents have dementia seem to provide better dementia care than nursing homes with a lower proportion of residents with the condition. For example, facilities where 90% or more of residents have dementia had significantly higher-skilled nursing hours per resident than nursing homes with lower percentages. In addition, hospitalization and emergency department admissions for residents with dementia dropped rapidly as the proportion of these residents increased. These findings suggest that different standards may be appropriate for supporting care for nursing home residents with dementia and may have important implications for staffing at skilled nursing facilities.

NIH continues to support research to better understand the factors affecting the dementia care workforce and staffing levels. In 2023, NIH funded the National Dementia Workforce Study , which will help generate new insights into the nature and training of the professional dementia care workforce and connect this information to objective measures of care delivered to persons living with dementia. This effort will complement the activities of the Advancing Workforce Analysis and Research for Dementia (AWARD) Network, launched in 2022. This network aims to advance research on the dementia direct care workforce — including geriatricians, social workers, home care aides, and nursing assistants, among others — to inform evidence-based policy and practice decisions.

References