The National Institute on Aging defines dementia, a major cause of impairment among older adults, as the loss of cognitive functioning, thinking, remembering, and reasoning and behavioral abilities, to the extent that it interferes with a person’s daily life and activities. Impairment as a result of dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of daily living. Estimates of the percentage of older persons with dementia vary, but its prevalence increases with age.
A number of conditions can mimic dementia, including dehydration, malnutrition, hearing loss, and depression. Medication mismanagement can also result in the appearance of dementia. People with dementia (70 percent of whom live in the community) and their caregivers use the full spectrum of home and community-based services (HCBS) available from a variety of public and private sector programs. Community dwelling individuals with Alzheimer’s disease and related dementias (ADRD) are at an increased risk of, among other things, unmet needs, malnutrition and injury and various forms of neglect and exploitation. The complexity of care of persons with advanced dementia is defined by the severity of functional and cognitive impairment, reliance on surrogate decision-making, inability to live alone and tremendous family/caregiver burden. Behavioral symptoms such as repetitive speech, wandering, and sleep disturbances are a core clinical feature of Alzheimer's disease and related dementias. If untreated, these behaviors can accelerate disease progression, worsen functional decline and quality of life, cause significant caregiver distress, and result in earlier nursing home placement.
Alzheimer's disease is responsible, at least in part, for an estimated 60 percent of cases of dementia. An estimated 5.8 million individuals in the United States are living with Alzheimer’s disease, that number is projected to triple by 2050. The anticipated increase is attributed to individuals living longer as a result of advances in medicine and technology, as well as social and environmental conditions and thus advancing to ages at which they are at increased risk of developing ADRD.
Estimates are that about half of older persons with dementia do not have an accurate diagnosis or any diagnosis. It is critically important to identify these conditions correctly to provide for appropriate referrals to dementia-capable services that are supportive of individuals living with dementia and their family caregivers. Given the impact of the dementia on people and communities, state and community service systems that wish to be dementia-capable should consider adopting key aspects of a dementia-capable HCBS model.
A dementia-capable HCBS system should:
Identify people with possible dementia and recommend that they see a physician for a timely, accurate diagnosis and to rule out reversible causes of dementia or conditions that resemble it.
Ensure that program eligibility and resource allocation take into account the impact of cognitive disabilities.
Ensure that staff communicate effectively with people with dementia and their caregivers and provide services that are person- and family-centered, offer self-direction of services, and are culturally appropriate.
Educate workers to identify possible dementia, and understand the symptoms of dementia and appropriate services.
Educate the public about brain health, including information about the risk factors associated with developing dementia, first signs of cognitive problems, management of symptoms if individuals have dementia, support programs, and opportunities to participate in research.
Implement quality assurance systems that measure how effectively providers serve people with dementia and their caregivers.
Encourage development of dementia-friendly communities, which include key parts of dementia-capability.
Information on how states and communities can become dementia-capable, thus increasing their ability to help people with dementia and their caregivers can be found in ACL’s paper entitled Dementia Capable States and Communities: Lessons Learned from Administration on Aging Grantees. Dementia-capable services within a home and community-based system (HCBS) are those that build upon and integrate existing programs from both private and public sectors. Public sector partners/programs include, but are not limited to, tribes or tribal organizations, the Centers for Medicare & Medicaid Services (CMS), the Centers for Disease Control and Prevention and the Department of Veterans Affairs.
The ACL’s Alzheimer’s Disease Programs Initiative (ADPI) is informed by the work and recommendations of National Alzheimer's Project Act Advisory Council and is dedicated to filling gaps in services, through the provision of HCBS to both targeted special populations and targeted training at both the State and Community levels. The ADPI is implemented with authority contained within Title IV of the Older Americans Act.
The ADPI is not intended as a program funding "research", in fact “research” projects will not be funded. The program is designed to pilot much needed dementia-capable HCBS programs to states and communities, evaluate program outcomes and using program outcome data to garner support to sustain successful initiatives beyond the federal program period. The ADPI program is intended to advance non-clinical, social models of HCBS in support of persons with dementia and their caregivers. It is through programs such as this that the Administration for Community Living (ACL) demonstrates its commitment to its mission to maximize the independence, well-being, and health of older adults, people with disabilities, and their families and caregivers.
Gould, E., Maslow,K.,LePore,M.,et al. Identifying and Meeting the Needs of Individuals With Dementia Who Live Alone. Accessed January 22, 2020 at https://nadrc.acl.gov/node/79 .
Gitlin LN, Kales HC, Lyketsos CG. Non-pharmacologic Management of Behavioral Symptoms in Dementia. JAMA. 2012;308(19):2020-2029.oi:10.1001/jama.2012.36918.
Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Accessed January 30, 2020 at https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r….
Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Accessed January 30, 2020 at https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r….
Vincent, GK, Velkof, VA. The Next Four Decades: The Older Population in the United States: 2010-2050. Washington, DC. US Census Bureau, 2010. Accessed February 28, 2018 at https://www.census.gov/prod/2010pubs/p25-1138.pdf.
Boustani M, Peterson B, Hanson L, Harris R, Lohr, KN. Screening for dementia in primary care: A summary of the evidence for the U.S. Preventive Services Task Force. Ann Intern Med 2003; 138(11):927-37.
Funding Opportunity Requirements
Applicants for Options A and B of this cooperative agreement funding must describe their current system as related to the goals, objectives, and core components of this FOA, including but not limited to, the identification of a lead agency, and development of partnerships designed to achieve program goals (i.e. Community stakeholders, Area Agencies on Aging, Evaluators, etc).
Option A: Grants to States
A.1: New Grants to States
New state applicants, those that did not receive ACL Alzheimer's grants between 2011 and 2019 must agree to and propose a plan to implement dementia-capable HCBS systems that meet the two FOA objectives outlined below, including the accompanying core components. Those states that have completed ACL Alzheimer's grants received between 2011 and 2019 and are already implementing programs meeting those requirements must propose activities to build upon the work of their ongoing program that can expand on the FOA objectives outlined below and the accompanying core components. All applicants are expected to fully describe their methods for achieving the following two objectives and their core components:
Objective 1: Create and sustain a dementia-capable HCBS system that includes Single Entry Point/No Wrong Door (SEP/NWD) access for people with Alzheimer's disease and related dementias (ADRD) and their caregivers.
In such systems, people with ADRD and their family caregivers have streamlined access to the full array of dementia-capable person-centered, public and private sector HCBS that promote community living and independence.
Applicants must fully describe how they plan to implement the following core components of Objective 1 by the end of the cooperative agreement period. If the applicant has held an ADSSP grant between 2011 and 2019, they must explain the work of their previous dementia systems project. The application will detail how the proposed project will enhance what presently exists in their dementia-capable State HCBS system. Core SEP/NWD components include:
1.a. Information, Referral and Access
This component requires that the grantee have a highly visible and trusted place for people with ADRD and their family caregivers to seek objective information on HCBS that maximizes their ability to remain independent in the community. Applicants must fully describe their method(s) for achieving this and providing access to a full range of services, which may include, but are not limited to dementia-capable person-centered home and community-based services; care transitions; and family caregiver support programs. Applicants must provide measurable targets for achieving maximum population coverage of dementia-capable information, referral and access for each year of the cooperative agreement period. For example, applicants might propose to have a dementia-capable HCBS system available in geographic areas where 25% of the state's population lives in the first year, 35% in the second year and 50% in the third year.
1.b. Options Counseling and Assistance
Options counseling enables persons with dementia and their family caregivers to understand and use the services available in their communities by assisting in:
• Identification of the person with dementias strengths, values, needs, and preferences;• Person-centered service plan development;• Enrollment in self-directed programs or seamless transfer into this process, as appropriate• Service initiation;• On-going assistance and follow-up.
Applicants must provide measurable targets for achieving maximum population coverage for Options Counseling during each year of the cooperative agreement period.
1.c. Person-Centered Care Transitions Across Multiple Settings
Care transitions models are person-centered, interdisciplinary approaches to integrating health care and social support services for individuals and their caregivers as they move across settings, such as hospitals, nursing homes, and home. Care transition service models identify individual needs and preferences, develop and activate comprehensive service plans, empower people to take an active role in their health care, and connect them to available resources.
Objective 2: Ensure access to a comprehensive, sustainable set of quality services/interventions that are dementia-capable and provide innovative services to the population with dementia and their family caregivers.
Applicants must describe the dementia-capable services/interventions proposed to meet Objective 2. At least one of the proposed services/interventions must be dementia-specific, evidence-based or evidence-informed, and designed for implementation with individuals living with or at risk of developing Alzheimer's or a related dementia and/or their family caregivers. ACL's definitions/requirements for both evidence-based and evidence informed interventions are found in both the funding opportunity requirement section and the glossary of this funding opportunity announcement.
Applicants must fully describe how they plan to implement the following three core components of Objective 2 by the end of the cooperative agreement period. These components include the following:
2.a Comprehensive set of services
Applicants must fully describe how people with ADRD and their family will have access to a wide range of dementia-capable person-centered HCBS that promote independence in the community. The comprehensive set of services must identify and indicate intent to implement at least one dementia-specific evidence-based or evidence informed service/intervention, as well as dementia-capable HCBS supports for family caregivers, and related supportive services. All applications must identify and indicate intent to implement at least one dementia-specific, evidence-based or evidence informed service/intervention. Examples of dementia-specific evidence-based and evidence informed services/interventions implemented through ACL state and community grant programs can be found in ACL's NADRC's paper entitled Grantee-Implemented Evidence-Based and Evidence-Informed Interventions. Best Practice Caregiving is a free online database of proven dementia programs for family caregivers and an excellent resource for organizations researching potential interventions for implementation in the community they serve.
2.b Quality assurance system
Applicants must fully describe their implementation and use of a quality assurance and improvement process that will help ensure delivery of quality, dementia-capable services. Applicants must propose measurable performance goals and indicators related to the quality assurance systems visibility, ease of access, responsiveness to persons with dementia and their family caregivers, efficiency and effectiveness. ACL's NADRC's compendium of Evaluation Measures Resources may provide assistance in identifying desired measurable outcomes of program activities.
2.c Sustainable service system
Applicants must fully describe how they plan to ensure sustainability of the grantees dementia-capable HCBS system. Sustainability involves leveraging existing traditional Federal and State level resources, as well as other private and public innovations underway. Grantees must maintain the infrastructure and capacity to deliver programs throughout the state including partnerships that have effectively embedded dementia-capability within HCBS systems, and an adequate number of delivery sites and workforce to deliver the programs.
As program outcomes are a key to sustainability, all applicants must identify program outcomes as well as measures to demonstrate program impact and evaluation strategies. Identified outcomes will document progress toward implementing and sustaining a comprehensive, dementia-capable system. ACL's NADRC's compendium of Evaluation Measures Resources may provide assistance in identifying desired measurable outcomes of program activities.
A.2: Expansion Grants to States
Applicants for expansion grants must describe their current system and the core program component grant activities implemented through a State dementia-capable systems integration cooperative agreement awarded between 2011 and 2019. Core components are outlined above in the section for new state grants. The application will describe the program component proposed for expansion as it relates to the existing project, the rationale for the expansion, the target consumers, the methodology and the desired outcomes for the proposed expansion. Applications for expansion cooperative agreements are expected to include quality assurance, sustainability and dissemination plans.
Option B: Grants to Communities
Grants under this option are dedicated to filling services gaps identified through the work of and recommendations from the National Alzheimer's Project Act Advisory Council. Option B projects are designed to provide dementia-capable home and community-based services (HCBS) to targeted special populations as well as targeted dementia capability training.
Applicants for Option B are those public or private community-based organizations that are able to demonstrate their operation within an existing dementia-capable HCBS system dedicated to the population they serve with the ability to articulate opportunities and additional services that would enhance and strengthen the existing system.
Successful applicants under this program will be leaders in existing dementia-capable HCBS systems designed to improve the quality and effectiveness of programs and services for individuals living with dementia and their caregivers. Applications will demonstrate intent to support individuals with ADRD and their caregivers, that address each of the three identified dementia-care service gap areas:
Develop and deliver supportive services to persons living alone with ADRD in communities: Individuals living alone are at an increased risk of, among other things, unmet needs, malnutrition and injury and various forms of neglect and exploitation. Applicants will describe actions they will take to identify and support individuals living alone.
Improve the quality and effectiveness of programs and services dedicated to individuals aging with intellectual and developmental disabilities (IDD) with ADRD or those at high risk of developing ADRD: Advances in medicine and technological advances are extending the lives of individuals living with IDD and those at high risk of developing dementia. Program activities designed to target the unique circumstances of these populations are imperative to this growing population.
Deliver behavioral symptom management training and expert consultation to family caregivers: Behaviors associated with ADRD can impact disease progression, functional decline and quality of life. Such outcomes may result in significant caregiver distress, impacting the ability to provide care. Provision of symptom management training and caregiver consultations are demonstrated to have positive outcomes.
Please see ACL's dementia-capability issue brief Dementia Capable States and Communities: Lessons Learned from Administration on Aging Grantees for more information on model dementia-capable systems.
In the development of their programs and addressing the required gaps, Option B applicants are encouraged to consider including in their proposed program activities that address the need for innovations in respite care, the needs of individuals with early onset dementia and their caregivers, and/or building workforce capacity to deliver dementia-capable long-term services and supports through training.
GENERAL PROGRAM REQUIREMENTS/COMPONENTS
All applicants to this funding opportunity announcement (Options A and Option B (State and Community)) are subject to the General program items listed below and will consider and include all of them in the development of their application, work and evaluation plans.
Successful applicants will propose a phased approach for implementation of their projects. The phases are described as follows:
Planning Phase: The period during which the grantee refines their proposed program Work Plan and Evaluation Plan, based on the plans contained in their original application. The resulting plans will be the ACL/AoA approved roadmap for the grantee to accomplish the goals, objectives, and core components of the ACL/AoA funded program. During the planning phase, and prior to entering the implementation phase, all grantees and their partners will complete ACL's Dementia-Capability Assessment to establish a baseline from which their program activities can be evaluated.
Applicants are to propose a planning phase of not more than 6 months from the notification date of the grant award. During this planning phase, grantees will be able to access no more than 15 percent of total grant funding to refine and expand on the work and evaluation plans submitted with their applications. ACL/AoA will be actively involved during the planning phase of the grant, to ensure that all ACL program objectives outlined in the Funding Opportunity Announcement are addressed. To conclude the planning phase the grantee must have received ACL/AoA's approval of their work and evaluation plans and uploaded those plans into the reporting system, the grantee and all relevant partners will have completed the initial Dementia-Capability Assessment and participated in a “Planning Phase Exit Conference”. Upon completion of those steps, grantees will progress to the Implementation Phase and access the remaining 85 percent of cooperative agreement funding.
Implementation Phase: The period during which the grantees implement their approved plan for accomplishing the goals, objectives, and core components of these objectives, as well as the evaluation of planned program activities. All grantees and their partners will complete annual Dementia-Capability Assessments, each Fall, over the course of the grant period.
The grantee may not advance to the Implementation Phase without ACL/AoA staff approved work and evaluation plans, initial dementia-capability assessments completed by the grantee and each partner, as well as a “Planning Phase Exit Conference”. Upon ACL/AoA approval of the aforementioned documents and completion of the assessments and the exit conference, the grantee will begin the implementation phase of the grant period.
Use of Evidence-Based/Evidence Informed Intervention
All programs must identify, by name, and describe the dementia specific evidence-based or evidence informed intervention they propose to implement, how it fits into their proposed overall program and the intended beneficiaries. The chosen intervention must fit the definitions outlined below.
Evidence-based programs or interventions: have been tested through randomized controlled trials and are: 1) effective at improving, maintaining, or slowing the decline in the health or functional status of older people or family caregivers; 2) suitable for deployment through community-based human services organizations and involve non-clinical workers and/or volunteers in the delivery of the intervention; 3) the research results have been published in a peer-reviewed scientific journal; and 4) the intervention has been translated into practice and is ready for distribution through community-based human services organizations.
Evidence-informed interventions: have substantive research evidence that demonstrates an ability to improve, maintain, or slow the decline in the health and functional status of older people or family caregivers. For the purposes of this announcement, an evidence-informed intervention is one that has: 1) been tested by at least one quasi-experimental design with a comparison group, with at least 50 participants; OR 2) is an adaptation or translation of a single evidence-based intervention.
Examples of dementia-specific evidence-based and evidence informed services/interventions implemented through ACL state and community grant programs can be found in ACL's NADRC's paper entitled Grantee-Implemented Evidence-Based and Evidence-Informed Interventions. Best Practice Caregiving, a free online database of proven dementia programs for family caregivers, is another excellent resource for identifying dementia specific evidence-based interventions. In addition to including information on the chosen dementia specific intervention in the project narrative, all applications must include an attachment that contains information on the dementia specific intervention intended to meet the evidence-based/evidence informed requirement. The attachment will include the name of the proposed dementia-specific evidence-based/evidence informed intervention, a brief description of it, including relevant information to demonstrate that it meets programmatic requirements/definitions. If a dementia specific evidence-informed intervention is proposed, the attachment document will include information on the single evidence-based intervention from which the evidence-informed intervention is derived.
Applicants must identify in the project narrative and in the project evaluation plan the intended, measurable outcomes (i.e. improved quality of life, reduced depression and stress/burden) of the proposed dementia-specific intervention, as well as providing estimates of persons served by each programmatic component. ACL's National Alzheimer's and Dementia Resource Center (NADRC) created a compendium of Evaluation Measures Resources that could provide assistance in identifying desired measurable outcomes of program intervention activities.
Direct Service Requirement
All successful applicants are required to dedicate 50% of the total program budget to the provision of direct services to persons living with dementia and caregivers. A definition of direct service is provided in the funding opportunity announcement Appendix. Budget narratives included in the program application must include clear identification of the lines within the budget where the funds for the required direct services will reside.
Grantees are required to collect information on services provided under the authority of existing or future approved data collections.
All successful grant applications MUST include a plan for a robust, third-party evaluation. A third-party entity is one that is not engaged in proposed program activities beyond development and implementation of the program's comprehensive evaluation plan and reports. Individuals or organizations involved in the development of any component of the proposed program would not qualify as "third party" evaluator.
At the onset of the project, grantees and their partners will be required to conduct a baseline assessment of the dementia-capability of their existing systems, using the National Alzheimer’s and Dementia Resource Center's (NADRC) Dementia Capability Assessment Tool. The assessment will afford grantees the opportunity to create metrics for use in future service program evaluations, as well as a basis for setting goals, objectives and milestones for program monitoring and reporting throughout the program period. In an effort to track program progress toward enhanced dementia-capability and document progress toward systems change, grantees will agree to conduct annual follow-up assessments in each year of program funding throughout the duration of the program. The annual follow-up assessment will be submitted with each Fall Semi-Annual Report, including a final assessment at the end of the grant period. Use of a progressive assessment model will ensure that, at the conclusion of the grant period, programs will be able to document their progress by reporting on the aspects of their project that were successful and those that were not, as well as the lessons learned.
Applications will be scored on the inclusion of a robust, third-party, project evaluation plan. Evaluations should, at a minimum, determine the effectiveness and impact of the strategies and processes used for execution of project goals at both the systems development and consumer (service provision) level. Applicants should include outcome measures that demonstrate the impact of the program on persons living with dementia and caregivers in the proposed program and evaluation plans (ACL will NOT fund any project that does not include measurable outcomes). All proposed projects will include at least one project component through which they will demonstrate impact on the quality of life of persons living with dementia.
More information on evaluation expectations can be found in Section V of this funding opportunity announcement.
Successful applicants are to draw on the expertise of ACL/AoA program staff and existing AoA-sponsored resources to develop, implement, and sustain their strategic work plans. All grantees are required to participate in technical assistance activities as they pertain to the program development, management and integration. This includes, but is not limited to, participation in regularly scheduled technical assistance conference calls, web casts, learning collaboratives and one-on-one technical assistance opportunities initiated by ACL/AoA staff, resource center staff or the grantees.