Notice of Special Interest (NOSI): Dementia Care Research: Programs and services for persons with dementia
Notice Number:
NOT-AG-21-046

Key Dates

Release Date:

January 6, 2022

First Available Due Date:
March 11, 2022
Expiration Date:
November 13, 2024

Related Announcements

PAR-22-093, Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R01 Clinical Trial Optional)

PAR-22-094, Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R21 Clinical Trial Not Allowed)

Issued by

National Institute on Aging (NIA)

Purpose

This Notice of Special Interest (NOSI) highlights priority areas of dementia care research other than intervention development. Applications focused solely on unpaid dementia care partners/caregivers may cite NOT-AG-21-047, and applications focused on the paid dementia care workforce may cite NOT-AG-21-049 in the Agency Routing Identifier field (box 4B). PLEASE NOTE: Applications proposing clinical trials will not be considered a high priority for this NOSI. Studies proposing dementia care intervention research are encouraged to explore whether PAR-21-307 Dementia Care and Caregiver Support intervention Research (R01- Clinical Trial Required) or PAR-21-308 Pragmatic Trials for Dementia Care and Caregiver Support (R61/R33 – Clinical Trial Required) would be more appropriate.

This NOSI invites applications on high-priority Alzheimer's disease (AD) and AD-related dementias (ADRD) care research areas as set forth by the National Institute on Aging’s Division of Behavioral and Social Research. The NOSI is based on expert discussions from the NIH 2020 Dementia Care Summit, the NASEM Decadal Survey of Behavioral and Social Science Research on AD/ADRD, and is aligned with AD/ADRD research implementation milestones.

In addition to affecting the health and well-being of individual patients and families, AD/ADRD has a significant impact on medical and social service systems. Persons living with dementia (PLWD) may experience issues with continuity of care as well as expensive, but variable and ineffective, health care and long-term services and supports (LTSS). If these issues are unaddressed, these problems will worsen as the number of PLWD increases. This NOSI encourages research on the care of persons living with dementia as well as the systems and the individuals within those systems that provide care to PLWD.

There is a need for research to better understand the outcomes associated with various forms and levels of care of PLWD across disease stages, etiologies, and dementia care settings, as well as the experience and consequences of care for PLWD. Research areas of interest include the following:

  • Burden of disease, including how disease stage is associated with costs of care and other financial implications of care provision
  • Studies that focus on person-centered outcomes and/or outcomes that matter to PLWD and families, including quality of care
  • Identifying health outcomes, including functional, social, and well-being for PLWDs, with particular interest in those who live alone and/or do not have a care partner
  • Identifying PLWD outcomes across settings, including home, assisted living, adult day care, respite, and nursing homes, to account for changes in health and well-being that can vary along the disease trajectory

For burden of disease factors, research is needed that extends beyond broad societal costs to examine the entire distribution of individuals affected by the disease in addition to population averages. Research areas of interest include the following:

  • Trends and differences in expenditures and other impacts across regions, household types, socioeconomic status, and racial/ethnic groups
  • The impact of dementia on PLWD (e.g., quality of life)
  • The unique impacts of dementia on PLWD living alone and/or without a care partner
  • Health impacts and how they might shape the relationships between PLWD, their families, other unpaid caregivers, paid care providers, and their communities

Research to elucidate disparities in the amount and quality of care provided, and disparities in the access to care and services with an emphasis on developing valid and reliable measures in these areas is strongly encouraged.

More research is needed to understand community support for dementia care. Research areas of interest include the following:

  • Whether and how components of existing infrastructure (e.g., transportation services, meal programs) provide necessary support to PLWD, caregivers, and their families
  • Determinants of the availability of home- and community-based (HCBS) services for PLWD
  • Determinants of service utilization
  • Characteristics of dementia-friendly communities

In addition, studies are encouraged in the following high-priority topic areas including, but not limited to, the following:

  • Examining the mechanisms or sources of disparities in health care access, utilization, or quality of care for persons living with AD/ADRD and their care partners and/or develop approaches to address these disparities
  • Examining the?integration of LTSS,?home-based care,?and medical care?with particular attention?paid?to care transitions?for?persons living with AD/ADRD to improve the timeliness of care as well as toimprove health and health care outcomes for PLWD and their families
  • Addressing the impact of policy and payment models and insurance on PLWD, their care partners, and health care systems, as well as economic and organizational factors associated with uptake of health care services
  • Addressing the ethical implications of inclusion of the care partner in the care team for the person living with AD/ADRD and to translate existing methods to assess consent capacity in research with and without a study partner
  • Examining models of care in LTSS settings (e.g., design, organization, financing) that promote PLWD and care partner/caregiver quality of life with particular interest in the role of care coordination
  • Identifying how regulatory and economic incentives and constraints affect access, use, quality, and health outcomes in health care settings, long-term care settings, and community-based settings
  • Examining how balance between safety and independence in care provision affects quality of life for PLWD
  • Examining differential physical and emotional health trajectories of PLWD when receiving different levels of services to help with activities of daily living

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

Application and Submission Information

This notice applies to due dates on or after March 11, 2022 and subsequent receipt dates through November 13, 2024. 

Submit applications for this initiative using one of the following funding opportunity announcements (FOAs) or any reissues of these announcement through the expiration date of this notice:

  • PAR-22-093,  Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R01 Clinical Trial Optional)
  • PAR-22-094,  Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R21 Clinical Trial Not Allowed)

All instructions in the SF424 (R&R) Application Guide and the funding opportunity announcement used for submission must be followed, with the following additions:

  • For funding consideration, applicants must include “NOT-AG-21-046” (without quotation marks) in the Agency Routing Identifier field (box 4B) of the SF424 R&R form. Applications without this information in box 4B will not be considered for this initiative.

Applications nonresponsive to terms of this NOSI will not be considered for the NOSI initiative.

Inquiries

Please direct all inquiries to the contacts in Section VII of the listed funding opportunity announcements with the following additions/substitutions:

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