Supporting State and Community Innovations in Dementia-Specific Respite Programs and Services

Background and OverviewThe role of unpaid “caregiver” is one that an estimated 11 million Americans have assumed in support the more than 6 million individuals in the United States living with Alzheimer’s disease and related dementia (ADRD). The Alzheimer’s Association estimates that those caregivers are providing more than 18 billion hours of care to people living with ADRD, valued at nearly $340 billion. [1] As the number of people living with ADRD continues to increase, so will the need to support their family caregivers, in person-centered, strengths-based ways, including though tailored approaches to the provision of respite care.Respite is one of the cornerstones of family caregiver supports. However, according to the National Strategy to Support Family Caregivers, gaps in the availability of, and access to, respite can be significant. Moreover, respite must be meaningful to the person receiving it.[2] Respite care takes many forms in the United States and is often used as a generic description for a diverse range of services and supports that provide the family caregiver with a break from their caregiving duties. [3] The National Institute on Aging defines respite as the provision of short-term relief for primary caregivers. [4] Respite can come in many forms and be delivered in many different venues, including but not limited to, homes, churches, community centers, adult day centers or healthcare facilities. It can be arranged for just an afternoon or for several days or weeks and can be provided by volunteers, paid staff or a combination of the two. There are a variety of ways in which respite is presently delivered including adult day programs, supervised outings, in-home companion care and overnight stays in facilities. Restorative respite breaks provided through respite are imperative to support ADRD caregivers in sustaining their role. Some innovative respite providers have found success in coordinating respite opportunities with activities designed to engage caregivers as an excellent method to engage them in training and support activities.Respite benefits are documented for both family caregivers and the person living with dementia, when the respite provider has specialized training that emphasizes preserving the dignity of the participant, building rapport with the family caregiver, and understanding the general pathology of common dementias.[5] The provision of meaningful respite activities while a caregiver participates in a supportive activity has dual benefits to the caregiver and the person living with dementia. ACL is committed to building awareness of the ways in which respite is beneficial to both ADRD caregivers and people living with dementia. Home and Community-Based Service (HCBS) providers can play a role ensuring caregivers have access to dementia-specific respite care. Respite services that are meaningful to the caregiver (i.e. what they want and need) as well as for the person living with dementia (i.e. meaningful engagement when participating in coordinated respite activities) supports keeping people living with dementia and their caregivers in their homes and communities for as long as they desire.Respite care is expensive, with limited availability in many communities, often making it difficult to access. Traditional respite providers charge by the hour for services, with minimum hours policies per visit. It is typically not covered by insurance which results in caregivers being responsible for 100% of the costs. The costs of respite and other supportive services can be a significant source of burden and stress on ADRD caregivers. The development and delivery of cost-efficient, effective, innovative models of dementia-specific respite care are necessary to support caregivers in the community.In the 6th Edition of their Annotated Bibliography of Respite and Crisis Care Studies, the ARCH National Respite Network and Resource Center stated that a “stronger evidence base is both desirable and necessary to recognize respite as a core component of a comprehensive strategy to support family caregivers, to merit funding for respite, demonstrate continuous quality improvement, and to identify and replicate respite best practices”.[6] The need to have stronger evidence of the benefits of respite to secure long-term financial support and quality assurance is compounded by the importance of educating caregivers in the benefits of self-care as vital for their success and resiliency and the role respite can play in their journey. It is imperative that caregiver understanding of respite, its intent and potential personal impact, as well as on the person for whom they are providing care, be expanded.Given the need for more, high-quality support and service options for family caregivers of people living with ADRD, ACL seeks to advance the field of respite for this population. In addition to advancing the field of respite, it is anticipated this new initiative will also support Outcome 3.2 of the National Strategy to Support Family Caregivers to increase the availability of a “robust array of trained respite options available that are local, convenient, and affordable” when caregivers need a break. [7]ACL will award one cooperative agreement to a single organization to engage and work with HCBS providers across the nation to develop, test and prepare for replication, new and innovative approaches to the delivery of meaningful respite services for family caregivers of people of all ages living with ADRD.NOTE: The ACL will Not consider or fund research projects under this Notice of Funding Opportunity (NOFO).Alzheimer’s Association. 2023 Alzheimer’s Disease Facts and Figures. Accessed June 1, 2023 at https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf .Administration for Community Living, 2022 National Strategy to Support Family Caregivers. Accessed June 8, 2023 at https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFam… .Kirk R, Kagan J. A Research Agenda for Respite Care: Deliberations of an Expert Panel of Researchers, Advocates and Funders. Chapel Hill, NC: ARCH National Respite Network and Resource Center; 2015.National Institute on Aging. Accessed May 18, 2023 at https://www.nia.nih.gov/health/what-respite- care#:~:text=Respite%20care%20provides%20short- term%20relief%20for%20primary%20caregivers.,healthcare%20facility%2C%20or%20a t%20an%20adult%20day%20center .ACL Rapid Cycle Research and Evaluation: Review of Respite Models for Family Caregivers of Alzheimer’s Disease and Related Dementias. Accessed June 2, 2023 at https://pblob1storage.blob.core.windows.net/public/nadrc/docs/ADRD%20Re… .ARCH National Respite Network and Resource Center, ARCH Annotated Bibliography of Respite and Crisis Care Studies, 6th Edition, 2022, Accessed June 2, 2022 at https://archrespite.org/library/arch-annotated-bibliography-of-respite-… for Community Living, 2022 National Strategy to Support Family Caregivers. Accessed June 8, 2023 at https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFam… .Purpose, Goals and Desired OutcomesThrough this new, five-year, national initiative, the successful applicant will develop and administer a demonstration program whereby sub-grants are made to HCBS providers to develop, test and evaluate innovative models of community-based, dementia-specific respite programs to support persons living with dementia (of all ages) and their caregivers. The prime grantee will be expected to:Increase the availability of innovative, community-based dementia-specific respite care in states, communities, and tribes by supporting the development and funding of pilot programs that include coordinated activities to demonstrate the impact of the pilots on the community being served.Provide technical assistance, accessible to providers across the United States and territories, to increase the capacity of HCBS providers and support their ability to design and deliver innovative dementia-specific respite services that meet the needs of caregivers and people living with dementia in the communities they serve.Demonstrate improved quality of life of caregivers and people living with dementia, by developing, delivering and documenting the impact of pilots of innovative dementia-specific respite programming in states, communities, and tribes.Similar models for this type of demonstration program can be found in ongoing work by The Jewish Federations of North America in their establishment and operation of ACL-funded efforts such as the Center on Holocaust Survivor Care and by Oasis Institute and their Partners with the National Community Care Corps. In this regard, applicants may wish to propose programs that include a phased approach to addressing the Priority Areas outlined below. It is ACL’s expectation that while significant focus on Priority Area 2 (training and technical assistance) will likely need to occur first, the successful applicant is expected to make a significant portion of first-year funding available as sub-grants to address Priority 1, to allow community-based service providers (sub-grantees), including but not limited to existing HCBS providers, to begin developing and piloting their respite care models. ACL expects that both Priority Areas 1 and 2 will be addressed over the entire course of the grant period, as new technical assistance, capacity building needs are identified through sub-grantee delivery of services. Applications will be scored, in part, on the extent to which applicants demonstrate intent to undertake implementation of Priority Area 1 in which they will deliver sub-awardee funding to community-based organizations in the first year of the project and throughout the duration of the grant cycle.Priority Area 1: Advancing the delivery of innovative, community-based, dementia-specific respite care models through grants with home and community-based (HCBS) organizations in the position to develop new or translate existing respite models for delivery at the community level. (Not less than 80% of each annual budget)In this priority area, ACL seeks to foster innovations at the community level whereby the prime grantee makes sub- awards to community-based entities to develop and implement innovative models of dementia-specific respite to support people living with dementia (of all ages) and their caregivers. The desired models of dementia-specific respite will be responsive to unmet respite needs in communities. Sub-awards shall not supplant, sustain, or replace existing programs and funding streams. Rather, the sub-grant program should fund new or expanded efforts to increase and sustain the availability of innovative models of dementia-specific respite.Applicants to this Notice of Funding Opportunity (NOFO) are encouraged to consider a broad range of possible approaches, while ensuring that local dementia-specific respite models are:Delivered in a variety of settings, by established organizations with the sufficient capacity to provide respite services;Designed to ensure that those providing services are trained in the provision of dementia-capable care and address the needs of people living with dementia (of all ages) and their caregivers;Models of care that include meaningful activities for the people living with dementia (of all ages) intended to benefit from the services;Support the ability of people living with dementia and their caregivers to remain in their homes and communities for as long as they desire;Targeting historically underserved populations: including those of greatest economic and social need, with particular attention to low-income individuals, including low-income minority individuals, individuals with limited English proficiency, and individuals residing in rural areas, andNot providing medical, administrative, or financial services.In proposing approaches in this priority area, applicants should describe the process by which they will develop and administer a sub-grant program to make funds available to local-level organizations to establish innovative dementia-specific respite programs.Applicants should thoroughly describe the process they will competitively solicit, objectively evaluate, select and make sub-awards to community-based organizations with the capacity to deliver dementia-specific respite. Program plan descriptions should include: A proposed timeline detailing the competition solicitation, application review and awarding process; A description of the entities that are eligible for funding; The range of respite services eligible for funding; The ways in which the anticipated services will enhance or expand community-based, dementia-specific respite for people living with dementia (at all ages) and their caregivers; and The ways in which the grantee and its sub awardee(s) will evaluate the impact of funded services on the people living with dementia (of all ages)and their caregivers, as well as the communities in which they are being implemented.For the proposed sub-grant program, priority shall be given to community-based entities with existing infrastructure and the ability to expand and or/enhance existing capacity to support people living with dementia (of all ages) and their caregivers through the provision of an innovative model of dementia-specific respite. ACL envisions that a broad range of not-for-profit entities will be eligible for sub-grant funding, including, but not limited to, local aging services organizations as defined in 102(5) of the Older Americans Act of 1965, disability service providers with the capacity to support people living with Intellectual and Developmental Disabilities (IDD) and ADRD, dementia-specific service providers, faith-based entities, and other community-based not for profit entities with demonstrated capacity and existing infrastructure to support people living with dementia (of all ages) and their caregivers. In the program planning and application process the prime grantee shall make clear that all sub-grantee funded programs will include planning for project sustainability beyond the Federal funding period.The successful grantee AND sub-grantees shall not be permitted to use project funds for construction and/or rehabilitation of buildings; basic research; medical or institutional care; income maintenance; or equipment purchases, unless such equipment is demonstrated to be necessary to carry out an activity otherwise fundable under Title IV of the Older Americans Act.IMPORTANT: The prime grantee selected from this NOFO and all sub-grantees are subject to adherence to all requirements, including those for making and monitoring sub-awards, as outlined in 45 CFR Part 75.Grantees and sub-grantees should understand that programs and deliverables funded through this grant will not be proprietary in nature. Program deliverables (tools, training, resources, manuals, etc.) created with grant dollars shall remain in the public domain, with promising practices, resource materials and tools posted on the website of ACL’s National Alzheimer’s and Dementia ResourceCenter (NADRC), for the benefit of the broader dementia respite delivery community.Priority Area 2: Training and Technical Assistance that supports increasing the capacity of community-based organizations (the sub-grantees funded under Priority Area 1 and the field more broadly) to implement dementia-specific respite programs and related services. (Not to exceed 20% of each annual budget)A community-based organization’s ability to develop and deliver sustainable dementia-specific respite is dependent upon the availability of a broad range of technical supports. Under Priority Area 2, ACL anticipates that the successful grantee and partners will undertake a variety of approaches for supporting the development and implementation of meaningful and innovative dementia-specific respite programming. This initiative is intended to strengthen existing dementia-capable HCBS systems, with a primary focus on the availability of respite services. Program-developed resources might include foundational materials and guidance to communities and organizations interested in establishing or expanding their ability to deliver innovative, dementia-specific respite programs. Program Deliverables, training, resources and tools developed with grant funding (by grantee and partners) will not be proprietary in nature. All grant developed resources and tools will be delivered to ACL at the completion of the grant and will be posted on the website of ACL’s National Alzheimer’s and Dementia Resource Center for the benefit of the greater service delivery community.To the greatest degree possible, all activities under this initiative should leverage existing national, state, and community-level partnerships, develop new partnerships, and share best practices to enhance program development and service delivery. Examples of possible focus areas for such efforts include, but are not limited to:The development, testing and dissemination of education and training programs in support of the delivery of community-based, dementia-specific respite in a broad range of community-based settings;Identification of promising models of innovative, cost-efficient, community-based, dementia-specific respite, including support in selection of sustainable models determined by community capacity;Enhanced workforce capacity, through the development and dissemination of training for respite providers in the delivery of community-based culturally competent, person-centered, strengths-based, dementia-specific respite services to address unmet community needs;Development and delivery of training of respite staff to deliver person-centered, strengths-based supports with a focus on the strengths, goals, preferences, needs, and desired outcomes of the services for people living with dementia (of all ages) and their caregivers;Development and implementation innovative dementia-specific respite programming;Establishment of community partnerships and collaborations in support of dementia-specific respite care; andAdministration of local programs, including sustaining dementia-specific respite programming.Additional Application Elements and ConsiderationsIt is the expectation of ACL that projects of this scope and intent require that prospective grantees come to the application process possessing the infrastructure and organizational capacity necessary to expedite startup of project activities (specifically a grant-making infrastructure) and to complete all stated goals and objectives in an efficient, effective and sustainable manner through the use of sound business practices.Applications must include a comprehensive project work plan and associated budget/budget justification that reflect the applicants best estimates of the range of permissible grant activities that will be undertaken, the level of resources necessary for each, and reflect that information in a detailed manner. Applications will be scored, in part, on the extent to which resource allocation across priority areas reflects an understanding of the needs to be addressed and the approaches to be taken.Proposed approaches in response to the priority areas described above, should incorporate descriptions of the following key elements within their application narratives:Alignment with the National Strategy to Support Family CaregiversThe release of the 2022 National Strategy to Support Family Caregivers (the Strategy), presents an opportunity to advance how respite services are designed and delivered, particularly for specific populations of family caregivers. Applicants to this NOFO should be familiar with the relevant components and actions contained in the Strategy. For example, under Outcome 3.2: Family caregivers can obtain respite services that meet their unique needs, it states, “High-quality respite is one of the most requested needs of caregivers, but gaps in the availability and affordability of access are significant.” This and other relevant outcome should be clearly addressed in proposals.Organizational CapacityTo meet ACL’s expectations for this initiative, the successful grantee will be one that possesses the organizational capacity to apply multi-faceted and comprehensive approaches in support of their proposed efforts. Applicants should fully describe their capacity to:Ensure the expeditious startup of project activities upon notice of award, including the establishment and execution of a sub-award/grant program;Work effectively at the national, state, and local levels to achieve desired outcomes;Use efficient and effective strategies that maximize limited resources while ensuring measurable impact of both service provision, workforce training and TA activities;Embed all efforts in targeted networks to ensure ownership and long-term sustainability;Qualitatively and quantitatively measure program/service impact and effectiveness; andUse technology where possible to maximize project reach and impact.Ensure that enhancement of the Quality of Life for people living with dementia and caregivers is an identified key outcome of funded efforts;Applicants must possess direct, in-house experience and expertise to carry out the desired activities outlined in this NOFO. Applications will be reviewed and scored based, in part, on the applicants' demonstration of key subject-matter expertise, as well as organizational experience, and capacity to carry out the proposed tasks.The use of sub-grant award process to carry out Priority Area #1 activities is expected. The sub-grants awards will facilitate the piloting of community-based, dementia specific respite models. The use of sub-grants/contracts are also permissible in Priority Area #1, as appropriate, when needs are identified to support specified programmatic goals and objectives. Applicants should keep in mind that all administrative functions, including sub-grant administration and evaluation, will be included in Priority Area #1 budget lines. Applicants should specify the rationale and criteria for selecting sub-grantees/subcontractors, as well as their approach for managing the activities of all sub-grantees/contractors to ensure successful efficient and effective completion of all tasks in both Priority Areas.Information DisseminationGiven this project's orientation as a demonstration program, ACL anticipates that the grantee will develop a robust and far-reaching dissemination strategy designed to ensure that project information, best practices and other information are available and shared broadly. Applicants should describe their dissemination plans and articulate the methods (e.g., peer-reviewed journal publications, presentations at national conferences, etc.) by which such activities are to occur. The successful applicant will include in their proposal the intent, at the completion of the grant period, to deliver to ACL a compendium of dementia-specific respite models implemented through the funding which will include relevant program information (implementation description/steps, costs, staffing, related research, etc.) and lessons learned through the pilot funded program.SustainabilityThrough this funding opportunity, ACL expects to identify and support implementation of innovative models of dementia-specific respite. The program funded activities will include comprehensive evaluation/outcome analysis to support local capacity to sustain the provision of dementia-specific respite programs beyond this Federal funding opportunity. Applications will be scored, in part, on the extent to which a feasible plan for the project’s sustainability beyond the period of Federal funding is articulated. Applicants are encouraged to consider and propose a range of potential approaches for ensuring sustainability of project sub-grantee efforts beyond the period of Federal funding.Performance Measurement and Project EvaluationPerformance measurement and project evaluation are necessary components of any new project. Such activities support monitoring progress towards stated goals and objectives, as well as opportunities to identify and address project weaknesses, ensuring continuous program improvement for funders, grantees and sub-grantees. Performance measurement and project evaluation are necessary components in both priority areas of this NOFO.Applicants to this NOFO should include a comprehensive plan for evaluating and reporting project performance and impact, as well as the delivery a final evaluation report ,containing impact analysis, at the conclusion of the grant period. This plan should include measurable outcomes that demonstrate the impact of increasing the availability (scope, reach, breadth and/or types) of community-based, dementia-specific respite programs to people living with dementia (of all ages) and their caregivers. Evaluation plans will extend far beyond satisfaction and willingness to refer individuals to the program, to demonstrate program impact, including Quality of Life for caregivers and people living with dementia. Process evaluations are acceptable in the development of new programs; however, they should be secondary to the impact evaluation data collected. Financial sustainability of programs implemented will also be included as an outcome of the evaluation. Examples of grantee program impact variables (outputs and outcomes) would include but not be limited to:OutcomesCaregiver stress, anxiety;Caregiver isolation, loneliness;Organizational and individual staff knowledge and confidence working with people living with dementia and their caregivers;Emergency room visits and hospital readmission;Workforce capacity to deliver dementia-specific respite, andIntent to place.OutputsNumbers of Caregivers and People living with dementia served;Hours of dementia-specific respite delivered;Number of different models of dementia-specific innovative respite delivered;Numbers of dementia caregivers provided access to respite and uptake in the service, and Availability and types of dementia specific respite services offered and/or range of clients served (e.g., geographic locations, demographic diversity).The NADRC has developed a compendium of evaluation tools to assist grantees in identification of development of outcomes for their evaluation plans, Evaluating Dementia Services and Supports: Instrument Resource List, 3rd Edition.Applicants should describe their plans to evaluate the anticipated program impact, identification and collection of information necessary to document and describe both outputs and outcomes for all activities undertaken in both priority areas of this cooperative agreement, including the work of the sub-grantees. It is anticipated that the grantee (and its subgrantees) will collect evaluation data on a set of agreed upon performance measures, outlined in the application, as part of the cross-site evaluation. Sub-grantees will collect data on additional measures specifically related to the implementation of their respite program and its impact on participants. The evaluation of the subgrantees delivery of respite should include at least two outcome data points collected across all sub-grantee funded projects (using the same questions/tool as identified by the grantee evaluation team) to demonstrate the impact of dementia-specific respite of caregivers and the person living with dementia. Caregiver burden should be a consideration when developing the non-research evaluation tools to be applied to sub-grantee programs. Applications should include examples of ways in which the collection of output and outcome data will occur (electronic, paper, interviews, etc.), its analysis and evaluation reporting. ACL has an approved data collection tool approved by the Office of Management and Budget (OMB), Alzheimer's and Dementia Program Data Reporting Tool (OMB 0985-0022). Applicants will agree to use this data collection tool to report a broad range of data (basic demographic information on caregivers and people living with dementia served, numbers and types of professionals trained, hours of direct service) in relation to program funded activities.Should the collection of information require the use of an information technology system (45 CFR 75), the grant recipient and sub-recipient(s) will be expected to adhere to the NIST Cybersecurity Framework to help ensure the security of any system used or developed by the grant recipient or sub-recipient(s). In particular, if the data to be collected includes Personally Identifiable Information (PII, 45 CFR 75) or Protected PII (45 CFR 75), the grant recipient and sub-recipient(s) must apply the appropriate security controls required to protect the privacy and security of the collected PII and/or Protected PII. There is no expectation of the need for the grantee or it’s sub-grantees to collect PII in the implementation of the respite program or its evaluation.Data Collection and ReportingThe prime grantee shall be responsible for designing and administering a data collection and reporting process for all sub-grantees. Applicants to this NOFO should describe the information collection processes and mechanisms by which sub-grantee activities and services delivered will be tracked and monitored.Collaboration and PartnershipsTo most effectively accomplish the goals and objectives outlined in this NOFO, ACL anticipates that the successful grantee will demonstrate the commitment to broad collaboration with other national and local organizations to ensure maximized cultural competency, geographical coverage and workforce availability. Applications should describe the partner organizations and the role of each in the planning, development and implementation of the proposed project.Letters of commitment from partnering organizations should be included as part of the application package and should reflect the unique contributions of each entity. Letters of commitment will be reviewed and evaluated to determine likely value of each named partner and its relative impact to the proposed project.Volunteer advisory committees are proven to be effective methods of ensuring that diverse ideas are considered in the planning and implementation of any new project. Applicants for this opportunity should explain if, and how, they will use an advisory committee to assist their efforts and include a listing of some of the individuals (including people living with dementia and their caregivers) or organizations that will be invited to participate.Statutory AuthorityThe statutory authority for grants under this NOFO is contained in Title IV, Section 411 of the OAA (42U.S.C. 3032), as amended by the OAA Amendments of 2006, P.L. 109-365. (Catalog of Federal Domestic Assistance 93.048, Title IV Discretionary Projects).