Notice to Specify High-Priority Research Topic for PAR-19-070 and PAR-19-071

Notice Number: NOT-AG-18-056

Key Dates
Release Date: January 2, 2019

Related Announcements
PAR-19-070
PAR-19-071

Issued by
National Institute on Aging (NIA)

Purpose

This Notice of Information specifies a high-priority topic of interest for PAR-19-070 "Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R01 Clinical Trial Optional)" and PAR-19-071 "Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R21 Clinical Trial Not Allowed)".

Behavioral and Social Science Priority Areas in Dementia Care Research: Programs and services for persons with dementia

This Notice directs applications to AD/ADRD high-priority research areas as set forth by the National Institute on Aging’s Division of Behavioral and Social Research (see https://www.nia.nih.gov/research/dbsr/behavioral-and-social-research-areas-alzheimers-disease).

Alzheimer’s Disease and Related Dementias (ADRD) impact the health and well-being of those with dementia and increasingly have influence on medical and social service systems. The current state of care for persons with dementia (PWD) leaves room for improvement—there is little continuity of care, and health care and long-term services and supports are expensive but likely variable and ineffective. Projections of future growth in the population of PWD indicate that these problems will only be exacerbated. This Notice encourages basic and translational research on persons with dementia as well as paid care providers. Of particular interest are observational studies and interventions that investigate access to and experience of care for those with ADRD, that focuses on person-centered outcomes, quality of care, the lived experience, and psychosocial processes of PWD, as well as the provision of and consequences of paid care.

There is also a need for research to better understand the desired outcomes of care of PWD across disease stages, etiologies, and dementia care settings as well as the experience and consequences of care for PWD as well as paid care providers. Research areas of interest include: burden of disease, including costs of care and other financial implications of disease; health outcomes, including quality of life of the person living with dementia; community support; and outcomes associated with the provision of paid care as well as the impact of care provision on paid care providers. Research investigating these outcomes and disparities therein, and an emphasis on developing new measures and measurement approaches in these areas, is highly encouraged.

For burden of disease factors, research is needed that extends beyond broad societal costs, looking at the entire distribution of individuals affected by the disease rather than population averages. Trends and differences in expenditures and other burdens across regions, household types, socioeconomic statuses, and racial/ethnic groups are thus encouraged. For health outcomes, research is needed to understand the impact of dementia on the person with dementia (e.g., quality of life). It is particularly critical to explore the impacts of dementia on persons living alone, perhaps without a caregiver at all. Research that considers health impacts and how they might shape the relationships between PWD, their families/informal caregivers, paid care providers, and their communities is encouraged. For community support, insufficient research has been conducted to understand the elements of the existing infrastructure (e.g. transportation services, meals on wheels, etc.) that provide necessary support to PWD, caregivers, and their families. Gaps that this initiative could address include determinants of the availability of a range of services for PWD and determinants of service utilization. Intervention development and the identification of new models of care in long-term care settings are also needed.

Observational studies as well as intervention research are encouraged in the following high priority topic areas but are not limited to:

  • Identifying which aspects of the community provide support to PWD
  • Identifying the mechanisms and risk factors that explain disparities in service access and service quality for persons with dementia
  • Identifying best models of care in LTSS settings (design, organization, financing) to maintain quality of life for PWD and their caregivers, with particular interest in care coordination
  • Identifying how regulatory and economic incentives and constraints affect access, quality, and health outcomes in health and long-term care systems for PWD
  • Identifying quality of life and health outcomes for PWDs, with particular interest on those who live alone with dementia
  • Identifying PWD outcomes across settings to account for health and quality of life outcomes that can vary along the disease trajectory.  Settings to include: home, assisted living, adult day care, respite, nursing homes.
  • Identifying how paid care provider training impacts PWD outcomes (e.g., CNAs receiving medication management training) 

NIA is interested in behavioral intervention development. This research should be in accordance with the NIH Stage Model (please see https://www.nia.nih.gov/research/dbsr/stage-model-behavioral-intervention-development) that capitalizes on and integrates basic research into the behavioral intervention development process to inform the development of efficacious dementia care interventions. Intervention research should address:

  • Stage of intervention development as indicated in the NIH Stage Model. Early Stage (Stage I, II, or III) research lays the necessary groundwork for Stage IV pragmatic trials and/or Stage V implementation and dissemination research. Where ready pragmatic trials (Stage IV) of maximally efficacious and implementable interventions can be conducted in clinical and LTSS (Long-term services and supports) settings.
  • Intervention fidelity.
  • The conditions under which an intervention is found to be ineffective for diverse populations (e.g. is the intervention ineffective due to the design of the intervention or because there is bias in participation).

Applications considered high priority should stimulate research involving intervention development, pragmatic trials, secondary data analysis, new data collection and data linkages, and measurement development, with an emphasis on variables relevant to persons with dementia (person-centered perspective), paid care providers, and communities. Applications that solely document descriptive trends without addressing potential mechanisms or explanations would not be considered a high priority, nor would applications that focus solely on caregivers without considering outcomes for PWD.

Inquiries

Please direct all inquiries to:

Elena Fazio
National Institute on Aging (NIA)
Telephone: 301-496-3136
Email: elena.fazio@nih.gov