LBDA Research Project Award

08/11/2025 | Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) Research Project Award supports research in areas identified by the LBDA as strategic research priorities and that addresses the unmet needs of people with LBD and their care partners.

Research Priority for this RFA: Understanding the Economic Burden of LBD

Objective:

The objective of the 2025 LBDA Research Project Award is to quantify, describe and characterize the economic impact of LBD (inclusive of both dementia with Lewy bodies [DLB] and Parkinson’s disease dementia [PDD]) in the United States. This includes the impact on 1) people living with LBD, 2) their care partners and families, and 3) healthcare systems and community resources compared to age-matched, non-LBD affected families in the United States.

Aim:

To inform all LBD stakeholders, including government, academia and industry, of the financial toll LBD takes on individuals, families, and societies and to foster research to reduce the economic burden of the disease.

Project Period:

1 year

Number of Awards Planned:

1 Award

Amount of Award:

Up to $150,000 total cost (including up to a 10% indirect rate).

Key Dates:

Application deadline: August 11, 2025, 11:59 p.m. Eastern
Scientific review: October 2025
Announcement of award: November 2025

Who Can Apply:

Applications will be accepted from researchers at accredited academic institutions in the United States or employees of other non-profit or for-profit organizations in the United States with expertise in health economics research. The applicant is expected to perform as principal investigator on the study, with responsibility for identifying, gathering, and analyzing necessary data, preparing and submitting a final report to LBDA and submitting a manuscript to a peer-reviewed scientific journal. Applications are particularly encouraged from researchers with experience working with populations with dementia and care partners and from researchers with prior publications on the economic burden of dementia or other chronic diseases.

Description:

Lewy body dementia is an umbrella term for two related disorders: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). To our knowledge, the full economic burden of LBD has not been established, although several studies have explored the cost of medical care, resource utilization, and caregiver burden in LBD [1-8]. An economic burden study will help inform policy makers, research funders, and health professionals about the major cost drivers of LBD, as well as demonstrate the financial burden of the disease on families and on public programs.

Research Objectives:

The main objective of this RFA is to quantify, describe, and characterize the economic burden of LBD (inclusive of both DLB and Parkinson’s disease dementia—PDD) on individuals living with LBD in the United States, their care partners and families, healthcare systems and community resources. Responsive proposals will capture both direct and indirect costs, and will account for costs to individuals with LBD, care partners and families, health systems, and community resources. Proposals that cover only a subset of these domains will be non-responsive. Examples of direct and indirect sources of economic burden include but are not limited to:

Loss of income of the person with LBD or care partners, due to loss of a job, missed promotion, early retirement, or reduced working hours
Cost of informal and paid caregiving in the home or long-term care facility
Cost of medical care for the person with LBD including clinic visits, medications, medical equipment, hospitalization, emergency department visits and ambulance services
Home modifications
Respite care and adult day services
Costs related to poorer health outcomes of dementia care partners
Costs of legal and financial planning

The second objective of this RFP is to provide rigorous data on the relative economic burden of LBD in comparison with other related conditions such as Alzheimer’s disease, frontotemporal dementia, vascular dementia, and Parkinson’s disease. Ideally, these data will come from the same kind of research and sources, but a comparison to other, high-quality publications may suffice. If using a comparison to the literature, please describe the comparison, including its strengths and weaknesses, in the research plan.

All applications should include a plan for both objectives.

With respect to the comparison of LBD and Parkinson’s disease, please indicate how you plan to account for the fact that some people with Parkinson’s disease also have Parkinson’s disease dementia (PDD, a form of LBD).

Each application must include a section on existing research to-date, explicitly addressing how your study design relates to and extends the evidence base by addressing gaps in prior research.

Data:

Applications must include a data management and sharing plan that includes depositing the data in a public repository and making it available for qualified researchers. Exceptions can be requested if the data is unavailable for sharing; this should be addressed in the application. Each application should include a contingency plan for data access challenges.

Deliverables:

At the end of the project period, the PI will present the results of the project confidentially to LBDA and select advisors.
At the end of the project period, a final report is due to LBDA. The final report should summarize the data and conclusions of the project, along with how the funding was spent. After a mutually agreed-upon embargo period, LBDA will disseminate findings from the study through LBDA communication channels.
The PI will submit at least one manuscript resulting from the project to a peer-reviewed scientific journal.
After a mutually agreed-upon embargo period, the PI will make the data from the project available to other qualified researchers.

Acknowledgement:

All publications and public presentations resulting from the project must acknowledge grant funding support by LBDA. The data management and sharing plan should include a requirement that publications and public presentations resulting from access to the shared data acknowledge LBDA as the original funders.

Application Procedure:

Applications will be collected through ProposalCentral (www.proposalcentral.com). Applications must be submitted by August 11, 2025, 11:59 p.m. Eastern.

Review Process:

Applications will be reviewed confidentially by LBDA and a Scientific Review Panel selected from the LBDA Scientific Advisory Council and external advisors where appropriate. The LBDA Board of Directors, upon recommendation from the Scientific Review Panel, reserves the right to make the final award decision.

Applications will be reviewed based on the 2025 NIH Simplified Peer Review Framework.

Application Inquiries:

All interested parties are encouraged to contact LBDA with any questions.

Please contact:

Keith Fargo, PhD

Director of Scientific Initiatives

kfargo@lbda.org

(404) 549-4244

References:

Boland, E., et al., The high cost of care and limited evidence on cost-effective strategies for Lewy body dementia: systematic review of evidence. BJPsych Open, 2024. 10(1): p. e20.
Desai, U., et al., Epidemiology and economic burden of Lewy body dementia in the United States. Curr Med Res Opin, 2022. 38(7): p. 1177-1188.
Espinosa, R., et al., Direct Medical Costs of Dementia With Lewy Bodies by Disease Complexity. J Am Med Dir Assoc, 2020. 21(11): p. 1696-1704 e5.
Frazer, M., et al., Burden of Illness Among Patients with Psychosis due to Dementia with Lewy Bodies and Other Dementias. Am J Alzheimers Dis Other Demen, 2023. 38: p. 15333175231163521.
Henderson, C., et al., The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort. J Alzheimers Dis, 2022. 86(1): p. 135-153.
James, B.D., et al., Hospitalization, Alzheimer’s Disease and Related Neuropathologies, and Cognitive Decline. Ann Neurol, 2019. 86(6): p. 844-852.
Tahami Monfared, A.A., et al., Burden of Disease and Current Management of Dementia with Lewy Bodies: A Literature Review. Neurol Ther, 2019. 8(2): p. 289-305.
Zhu, C.W., et al., Costs During the Last Five Years of Life for Patients with Clinical and Pathological Confirmed Diagnosis of Lewy Body Dementia and Alzheimer’s Disease. J Alzheimers Dis, 2023. 92(2): p. 457-466.