National Plan to Address Alzheimer's Disease: 2016 Update. Appendix 2: 2016 Recommendations and Federal Response

08/01/2016

Since 2012, the National Plan and its accompanying recommendations have catalyzed progress in the field of AD/ADRD.

The 2016 Recommendations from the public members of the Advisory Council, and the responses from the relevant federal agencies are presented below. As stated previously, fulfilling the recommendations is contingent on limitations on legislative authority, resources, and data among the federal agencies and the Federal Government, and this appendix makes clear which recommendations have been addressed and which would require congressional authority or additional resources.

RECOMMENDATION 1

The 2016 National Plan should continue to provide a robust, comprehensive, and transformative scientific roadmap for achieving the goal of preventing, effectively treating and providing effective care and services for AD/ADRD by 2025.

  1. A roadmap for accomplishing the primary goal of the Plan should include input from experts in the field through research summits on AD/ADRD dementias including a research summit on care and services.
  2. Recommendations from these summits and the research community should be re-evaluated each year and translated into milestones.
  3. Include specific research milestones to:
    • Reduce racial/ethnic/socioeconomic disparities in AD/ADRD.
    • Make significant improvements in research recruitment rates and outreach among diverse populations.
    • Re-evaluate research priorities among AD/ADRD across all research areas (e.g., from identifying disease modifying treatments to identifying effective care and services).
    • Include and prioritize specific milestones for populations at high risk for AD/ADRD (e.g., people with Down syndrome).
    • Increased attention should be paid to person-centered and family-centered outcomes with respect to research planning and the delivery of care and services.

       

NIH Response

NIH will continue to engage a broad range of stakeholders, including academia, industry, NGOs, and individuals directly affected by AD/ADRD, in advancing the goals of the National Plan. This Plan focuses on identifying finding effective interventions and improving care and services, and its future updates will build upon research advances and emerging opportunities, and will be informed by additional research summits as well as feedback from the broader community.

NIH leadership and staff will also update its specific research plans and cost estimates annually, as outlined in each year's Bypass Budget for Alzheimer's Disease and Related Dementias. Part of this process involves regularly updating, implementing, and tracking a broad set of specific AD/ADRD research milestones. To enable federal agencies and other organizations to track progress in reaching these milestones, NIH has recently launched a searchable database at https://www.nia.nih.gov/alzheimers/milestones/. The Advisory Council's recommendations regarding specific research milestones will greatly contribute to these NIH planning processes.

For more information, see:

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RECOMMENDATION 2

A top priority remains the urgent need to continue to increase annual federal research funding sufficient to meet the 2025 goal.

  1. Initial estimates of that level are $2 billion per year but may be more. This investment would be applied to AD/ADRD research initiatives spanning basic, translational, clinical, care and services research.
  2. The annual research funding target should be dynamically modified to approximately 1% of the cost of caring for persons with AD/ADRD.
  3. The annual professional judgment budget recommended by the Alzheimer's Accountability Act and prepared by NIH should reflect the science-driven funding needs for the budget year to enable investigators to reach the 2025 goal of the plan.

     

NIH Response

As a component of HHS under the Executive Branch of the United States government, NIH cannot comment on targets for -- or algorithms that could be used to estimate -- the total research funds needed for AD/ADRD research, beyond the President's Budget and the estimate that NIH submits as part of the Bypass Budget for Alzheimer's Disease and Related Dementias.

For more information, see:

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RECOMMENDATION 3

The 2016 National Plan should develop research goals aimed at the establishment of recommendations to improve uptake, spread and delivery of evidence-based and evidence-informed care and services.

  1. Enhance methodologies to effectively engage persons with dementia and families in research on care decision making and planning.
  2. Develop and implement quality care measures across all settings that include person-centered and family-centered outcomes.
  3. Identify and evaluate (non-drug) care strategies that reduce disease burden and delay disease progression, and evaluate their costs and downstream effects.
  4. Study comprehensive dementia care from time of diagnosis to end-of-life and associated costs.
  5. Develop and evaluate effective care programs across diverse settings, disease etiologies and disease trajectories to address key clinical features including NPS and functional decline.
  6. Convene a conference of key stakeholders to identify a meaningful pathway or pipeline for developing and testing non-pharmacological treatments, and scaling up and implementing effective approaches.

     

Combined Federal Response

Research on provision of care and services for individuals with AD/ADRD and their families is an important research priority at NIH. Two FOAs (PAR-15-348 and PAR-15-351) released in September 2015 focus on identifying, characterizing and addressing the needs of formal and informal caregivers and care recipients. Nearly all of the Advisory Council's recommendations were addressed in the 2015 FOAs, and NIH will be happy to consider all of the Advisory Council's specific recommendations for inclusion in future research agendas.

For more information, see:

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RECOMMENDATION 4

Emphasis should be given to the standardization of terminology in dealing with cognitive and dementing disorders.

  1. An integrated conference should be convened to develop consistent language for cognitive disorders among the scientists, care providers and the public.
  2. Engage all of the stakeholders around these issues to reach a consensus for the benefit of persons with dementia, their family members and caregivers, and the scientific and service communities.

     

NIH Response

NIH supports the effort to standardize language in this area of research, and devoted a special session to this topic at the recent Alzheimer's Disease-Related Dementias 2016 Summit, specifically to discuss issues and challenges regarding nomenclature and to gather suggestions on how to move forward. One of that Summit's draft recommendations proposed that a working group be organized to include all stakeholders and convene a workshop to develop a coherent nomenclature for all dementias. Once this working group is established, it will develop a plan for taking next steps and gathering public input on the issue. NIH recognizes that standardization is critical, but standards developed and applied for different types of stakeholders (e.g., research vs. public) may need to be interoperable rather than identical.

For more information, see:

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RECOMMENDATION 5

As recommended in the National Plan the United States government should support global efforts to address issues of research, care and services.

  1. United States public and private entities should acknowledge and scrutinize the work of the WDC.
  2. Continued collaborations on international research efforts should be promoted.

     

NIH Response

NIH communicates regularly on global efforts in a variety of forums with government representatives and many other stakeholders in the international dementia community. Staff welcome these discussions and resulting opportunities for collaborations. As one critical example, NIA and the Alzheimer's Association developed the IADRP tracking system, in order to catalog, search, and interrogate projects in this area of research supported by NIH, other United States federal and state agencies, several voluntary organizations, and many international funders. The United States welcomes additional participation in this database by governmental organizations or NGOs. IADRP currently captures more than 7,000 unique projects conducted by more than 4,000 researchers across more than 1,000 institutions -- supported by 35 public, private and international funding organizations in ten countries, including the United States, Australia, Brazil, Canada, Czech Republic, France, Italy, the Netherlands, Poland and the United Kingdom.

In addition, NIA co-hosts the quarterly international funders conference calls with the Alzheimer's Association -- which offers an opportunity for NIH and other organizations to discuss research priorities and initiatives.

As a third example, foreign institutions are eligible to apply for funding to support research solicited in both of the FOAs for Research on Informal and Formal Caregiving for Alzheimer's Disease (PAR-15-348 and PAR-15-351), which specifically encourage both national and cross-national population-based research, and in the Health Disparities and Alzheimer's Disease FOA (PAR-15-349).

For more information, see:

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RECOMMENDATION 6

The 2016 National Plan should increase early detection and diagnosis of AD/ADRD by encouraging and promoting cognitive assessment; and confirm measurement strategies to track progress within 2 years.

  1. Encourage clinicians to implement GSA's Workgroup on Cognitive Impairment Detection and Earlier Diagnosis' four-step process. The steps include: (1) "Kickstart the cognition conversation;" (2) "Assess if symptomatic;" (3) "Evaluate with full diagnostic workup if cognitive impairment detected;" and (4) "Refer to community resources and clinical trials, depending on the diagnosis."
  2. Promote early detection and diagnosis: support continuing education efforts that improve health care providers' ability to recognize early signs of dementia, including AD/ADRD, and to offer counseling to individuals and their care partners. Sessions should enhance health care provider awareness and understanding of the Medicare AWV and knowledge of validated cognitive assessment tools, through local and state conferences.
  3. Determine if and how the Medicare AWV can be used to measure the rate of screening for cognitive impairment. Also, determine if and how other measures, such as items within the Physician Quality Reporting System (PQRS), could be used to track progress regarding the rate of screening for cognitive impairment.
  4. Measure and publicly report data on AD/ADRD diagnostic levels nationally and by state, released within 6 months of year end.
  5. Expand Diagnosis Disclosure, Improve Assessment and Care Planning, and Enhance Care Coordination. Develop and implement educational campaigns directed towards: (a) persons at risk for dementia and their family and caregivers; and (b) clinicians capable of conducting cognitive screening assessments. For the education of clinicians, include information about best practices for how to conduct the cognition conversation such that the diagnosis is understood, how to conduct conversations about care planning, and how to enhance care coordination through referrals to community resources. For the education of persons at risk for dementia and their family and caregivers, include information about what to expect after cognitive screening.

CMS Response

In Response to Recommendation 6.a. CMS appreciates the GSA workgroup's findings and conclusions to increase cognitive impairment detection and earlier diagnosis by primary care providers. The agency is not planning, at the present time, to issue regulations or other policy guidance requiring providers to use a particular tool or tools for detection of cognitive impairment. Physicians have discretion to choose an appropriate tool that meets their needs, and those of their patients, including during Medicare's AWV.

In Response to Recommendation 6.b. CMS regularly updates beneficiaries and other stakeholders regarding Medicare coverage of the AWV, including through the Medicare & You Handbook. In addition to the AWV, Medicare covers a range of mental health services including counseling or therapy furnished by a psychiatrist, psychologist, social worker, or certain other practitioners in an outpatient setting. Family counseling may also be covered if the main purpose is to help with the beneficiary's treatment. Medicaid, depending on the state, may furnish an array of rehabilitative and habilitative services.

In Response to Recommendation 6.c. CMS is currently developing electronic clinical quality measures (eCQMs) that address screening for cognitive impairment. These eCQMs complement Medicare's AWV not only for screening but also for family/caregiver engagement. These eCQMs are:

  1. Cognitive Impairment Assessment Among At-Risk Older Adults: Percentage of patients age 75 years or older at the start of the measurement period with documentation in the EHR at least once during the measurement period of: (1) results from a standardized cognitive impairment assessment tool; or (2) a patient or informant interview.
  2. Documentation of a Health Care Partner for Patients with Dementia or Mild Cognitive Impairment: Percentage of patients age 18 years or older with a diagnosis of dementia or MCI, with documentation of contact information for a designated health care partner during the measurement period.

These eCQMs will be considered for future use in CMS quality reporting programs and, therefore, may allow CMS to track the progress of screening for cognitive impairment.

Regarding "Assess the beneficiary's cognitive function by direct observation, with due consideration of information obtained via beneficiary reports and concerns raised by family members, friends, caretakers, or others," CMS's cognitive impairment measures complement this activity, and both the Assessment measure and the Documentation of a Health Care Partner measure apply to beneficiaries within and outside of an AWV.

In Response to Recommendation 6.d. CMS has published a "Mapping Medicare Disparities" tool that allows stakeholders to access geographic information about chronic conditions, including AD/ADRD. The tool permits comparisons by gender, race and ethnicity, age, and dual status, in outcomes, utilization, and spending. CMS also provides researchers access to Medicare and Medicaid beneficiary, claims, and assessment data through the Chronic Conditions Warehouse. Two of the available conditions are AD, and ADRD or Senile Dementia.

In Response to Recommendation 6.e. CMS supports a person-centered approach to health care delivery, where the beneficiary is at the center of directing their care, achieving the health care goals for the aspects of their lives he or she deems important. Beneficiaries may make decisions based on their personal preferences in partnership with their clinician regarding a diagnosis, as well as other health care matters. The agency is striving to improve clinical care through, for example, the Comprehensive Primary Care Initiative, where primary care physicians are asked to engage in five functions: access and continuity, planned care for chronic conditions and preventive care, risk-stratified care management, patient and caregiver engagement, and care coordination across the medical neighborhood. CMS's TCPI is providing peer-to-peer support to primary and other clinicians through improved communication, dedicated coaches, notification alerts, promotion of treatment of behavioral health conditions, support of improved medication management, better data reporting, and promotion of person and family engagement. Other organizations/associations are aligning practice guidelines across specialties and sharing best practices. CMS does not have a mechanism to identify or educate beneficiaries "at risk of" dementia, or their families and caregivers.

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HRSA Response

In Response to Recommendation 6.b. HRSA, through its GWEP, will continue to support transforming clinical training environments by developing a health care workforce that maximizes patient and family engagement to improve health outcomes for older adults by integrating geriatrics with primary care. The GWEP aims to provide the primary care workforce with the knowledge and skills to care for older adults by collaborating with community partners to address gaps in health care for older adults through individual, system, community, and population-level changes. All 44 GWEP awardees are providing dementia training. GWEP grantees are continuing to educate the health care workforce on the early detection and diagnosis of AD/ADRD including the use of GSA's four-step process and the Medicare AWV. HRSA is in the process of identifying best practices in dementia training.

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NIH Response

In Response to Recommendation 6.b. With respect to education on early detection and diagnoses, several NIA resources are already available to support clinicians in assessing and managing patients with cognitive impairment; see the "Assessing Cognitive Impairment," "Managing Cognitive Impairment," and the "Patient Checklist" sections of the Alzheimer's and Dementia Resources for Professionals web page. Moreover, clinicians can use the "Talking with Your Patients About Cognitive Problems" chapter of NIA's new Talking with Your Older Patient resource to initiate conversations about these and other related issues. NIH strongly supports moving forward with an educational outreach campaign to clinicians.

For more information, see:

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RECOMMENDATION 7

The 2016 National Plan should enhance care planning and care coordination by increasing the use of person-centered and caregiver goals, and improving measurement within 3 years.

  1. Identify standards of care that reflects delivery of a comprehensive assessment to establish the diagnosis of dementia, identification of contributing factors, identification of support needs, and formulation of a care plan.
  2. Develop and implement a plan to improve measurement capability so that the perspectives and goals of persons with AD/ADRD, their families and caregivers are known.
  3. Incorporate best practices from the CMS Financial Alignment Initiative, including guidance provided in "three-way contracts" between CMS, states and health plans to improve care coordination for dementia. One example is the Dementia Cal MediConnect program which implemented care manager training and technical assistance in response to California's three-way contract specifying that each health plan must have a dementia care specialist.

CMS Response

In Response to Recommendation 7.a. In the CMS Quality Strategy, the agency actively encourages person and family engagement throughout the care continuum, including incentivizing health plans and providers to deploy effective person resources such as person-centered care plans. Person-centered care planning is a focus across CMS's programs, including in Medicaid's TEFT grants and personal health record (PHR), case management, in PACE, HCBS requirements, the Financial Alignment demonstrations; and in Medicare, in the payment for Transitional Care Management and Chronic Care Management services. Often such a plan would include the paid and unpaid supports the beneficiary needs to achieve his/her personal goals. CMS has also worked with the NQF on 12 endorsed quality measures for care coordination, and on the endorsed and submitted measures for person-centered and family-centered care, including a new tool for HCBS experience of care.

In Response to Recommendation 7.b. In 2015, CMS issued guidance on Requirements for Person-Centered Plans (PCPs) for HCBS. The PCP is synonymous with a "plan of care," "care plan," "individual services plan," and other terms used to describe a written individual plan based on the individual's unique needs, goals and preferences. Medicaid's Electronic Long-Term Services and Supports (eLTSS) Initiative is identifying and harmonizing electronic resources to enable the creation, exchange and reuse of interoperable person-centered records for use by clinical and HCBS providers, payers and the individuals they serve. The information within these records can help to improve the coordination of health, social services, and other services that support a beneficiary's mental and physical health.

In Response to Recommendation 7.c. The recommendation references the Cal MediConnect Dementia Project, which was funded via a grant from ACL to the California Department of Aging. Cal MediConnect itself is a demonstration under the Medicare-Medicaid Financial Alignment Initiative, jointly managed by CMS and the California Department of Health Care Services. In Cal MediConnect, CMS and DHCS execute three-way contracts with health plans to deliver a wide array of Medicare and Medicaid services. The three-way contracts for Cal MediConnect include requirements that health plans have dementia care specialists amongst care coordination staff. The state worked with the Los Angeles Alzheimer's Association chapter to utilize the grant to provide training and technical assistance to the plans to meet this requirement. CMS plans to host a national webinar to share the promising practices facilitated by this project; other states have looked at the dementia language in the contract. Most recently, contracts for a comparable demonstration in Rhode Island include similar requirements.

CMS has bolstered the site-specific activities with national dissemination and capacity-building. CMS, in collaboration with American Geriatrics Society, Community Catalyst, and the Lewin Group, hosted a series of webinars in 2015 and 2016 to help health professionals in all settings and disciplines expand their knowledge and skills in the unique aspects of caring for older adults with Alzheimer's disease and in working with their caregivers.

For more information, see:

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NIH Response

Clinical care research is a critical research priority at NIH, with investments made to improve early diagnosis of AD/ADRD, support translational and clinical research that moves us closer to preventative strategies and treatments, and identify interventions that can reduce caregiver stress and burden. Two FOAs addressing clinical research (PAR-16-364 and PAR-16-365) were issued in October 2015 to stimulate both early and late-phase clinical trials, and many promising new therapies are moving into clinical testing, including LM11A-31, a compound able to enter the brain and prevent the loss of nerve cells and the connections between them; BPN14770, a drug that restores function of damaged synapses in the brain; and allopregnanolone, a neuroactive steroid that promotes growth of new neurons and may protect against Alzheimer's pathology.

In addition, the caregiver FOAs issued by NIA and National Institute of Nursing Research in September 2015 (PAR-15-348 and PAR-15-351) solicit basic and translational research that will increase understanding of the needs of individuals with AD/ADRD, and their caregivers, and develop interventions to reduce caregiver burden and improve patient outcomes across various settings. Specifically, these FOAs encourage research that will lead to better definition and characterization of informal and formal caregiving; the domains of needs of caregivers and care recipients across the care continuum; the key social structural variables which contribute to variance in caregiving burden; and factors that characterize care delivery and care coordination models that reduce burden on caregivers and care recipients. These FOAs also encourage research that will lead to the development of efficacious financial planning interventions aimed at anticipating costs of LTSS.

For more information, see:

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RECOMMENDATION 8

The 2016 National Plan should increase the number of communities working to become dementia-friendly by 50% within 1 year.

  1. Encourage efforts to foster Dementia-Friendly Communities. As an example, tools and resources used in Minnesota have been replicated through a privately-funded collaboration called Dementia Friendly America; under this initiative all United States communities have access through a website (http://www.dfamerica.org) to free tools, resources, best practices and technical assistance to support them in working to become dementia-friendly. Incorporate examples such as this into an update of the November 2011 Dementia-Capability Toolkit and the September 2014 report, Dementia-Capable States and Communities: The Basics; and/or promote expanded use of the Toolkit and report.
  2. Promote the Dementia-Friendly Community approach as an organizing vehicle to implement state AD/ADRD plans. A public-private collaborative approach should provide funding that is designed to specifically support communities and/or states with seed money to foster the coordination of community efforts and support technical assistance through a centralized hub and/or state lead entity. In 2016, this collaborative should fund at least 20 communities (via an Request for Proposal process) and a technical assistance hub. The communities chosen should reflect differences in cultural groups and size of community, as well as rural and urban locales.

ACL Response

ACL, through its ADI-SSS and ADSSP cooperative agreements, continues to use available federal funding to provide states and localities with opportunities to implement projects that include dementia-friendly community components. References to the resource mentioned in this sub-recommendation appear in the 2014 report. Any future updates to these materials will also recommend that readers explore dementia-friendly resources as they consider improvements to their service systems.

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HRSA Response

In Response to Recommendation 8.b. HRSA is also working with federal partners at ACL, CDC, CMS, and VA on a contract to develop a Uniform Curriculum to educate providers about how to detect cognitive impairment and assess and diagnose AD/ADRD work with persons living with AD/ADRD and their families, link persons living with AD/ADRD and their families to support services in their community, identify signs of caregiver burden and depression; educate physicians and other health care providers about accessing LTSS, and provide caregiver dementia training. The purpose of the curriculum is to build a workforce with the skills to provide high-quality care, ensure timely and accurate diagnosis, and identify high-quality dementia care guidelines and measures across care settings. Specifically, 16 core modules along with nine caregiving modules will be developed and pilot tested. These modules build upon the ACT on Alzheimer's Preparing Minnesota Communities training materials and address various high-priority issues related to the detection, management, and treatment of AD/ADRD.

For more information, see:

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RECOMMENDATION 9

The 2016 National Plan should convene a national dementia care and services research summit.

  1. Build on existing work to identify research priorities related to improving early detection and diagnosis of AD/ADRD, providing care and services to persons with dementia and family caregivers, and providing recommendations as to standards of care, best practices and priorities.

Combined Federal Response

The federal agencies are working together and with the appointed Steering Committee to support the development and implementation of a National Research Summit on Care and Services for Persons with Dementia, Family Members, and Caregivers.

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RECOMMENDATION 10

States, HHS, and Tribes must assure robust dementia-capable LTSS systems to meet the growing impact of AD/ADRD.

  1. Increase the number of states with an identified state lead entity for AD/ADRD to coordinate activity across state agencies and programs, and to work with state, local and private sector partners to implement strategies in concert with the National Plan.
  2. National partners should work with HHS and states to assure engagement of state governors and legislatures in state efforts to address dementia-capable LTSS, expand use of evidence-based and best practices, and advocate for adequate funding for LTSS.
  3. Double current funding for the ADSSP and ADI-SSS program to increase state and communities' use of evidence-based and evidence-informed strategies, programs, and dementia-capable systems.
  4. Provide adequate funding to support state lead entities to plan and coordinate public and private activities to assure states are able to address the growing impact of AD/ADRD and assure dementia-capable health and LTSS systems.
  5. Increase state and local public health role in supporting brain health, prevention, surveillance, and community policies to support cognitive health, implementation of CDC's Healthy Brain Initiative: Public Health Road Map, and incorporation of brain health and AD/ADRD into other existing public health efforts.
  6. Amend Older Americans Act and expand funding to support making Title III services available to people under age 60 with younger-onset dementia.
  7. Adopt common metrics that states, Tribes, and communities can use to measure and track progress in developing dementia-capable LTSS.

ACL Response

ACL continues to make federal funding available to promote new dementia-capable service systems across the country, expand existing systems, and foster evidence-based approaches to serving special populations at risk of acquiring dementia. Under ACL's grant programs, dementia-capable systems are required to have lead entities and these systems have access to a national resource center, which has developed a tools states and communities can use to measure their progress toward reaching and expanding dementia-capability. ACL would welcome opportunities to work with state and local organizations to disseminate the learnings from these grants to states and localities. Other recommendations in this section would require changes to federal law or appropriations.

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CMS Response

CMS supports person-centered and family-centered care (see CMS Quality Strategy). In Medicaid, CMS permits states to electively offer self-directed services to beneficiaries who are eligible for their HCBS programs. To implement Medicaid HCBS programs, states are required to provide CMS with performance measures tailored within the HCBS quality framework. CMS, with other HHS operating divisions, is working with NQF to begin the process of understanding more about quality measurement gaps in HCBS. CMS has also issued a Notice of Proposed Rulemaking, CMS 3260-P that, among other improvements, outlines proposed requirements for cultural competence in long-term care facilities.

In Response to Recommendation 10.a. CMS does most of its work at the state level on LTSS including services to older adults and people with disabilities, through the Medicaid program, as Medicaid covers certain institutional and HCBS to eligible beneficiaries. CMS agrees that the involvement of state Medicaid agencies is important in coordinating programs and policies that impact individuals with AD/ADRD, and its state partners design some programs by "targeting" beneficiaries with certain conditions. CMS approves aspects of the Medicaid state plan including waivers that are submitted by states.

In Response to Recommendation 10.b. CMS works regularly with the listed national partners and others on many issues related to LTSS in Medicare and Medicaid including HCBS, nursing facility care, quality improvement, caregiving, and other topics that impact people with AD/ADRD.

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NIH Response

Beyond research-specific efforts, NIH is also committed to continuing to enhance and provide evidence-based information, resources, and referrals through the ADEAR Center to specific populations of people with AD/ADRD and their caregivers including younger people, non-traditional families, people with IDD, such as Down syndrome, and racial and ethnic minorities who are at increased risk of acquiring AD/ADRD.

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RECOMMENDATION 11

HHS, states, Tribes, and health care and aging services must assure that family or unpaid caregiver health and well-being is addressed.

  1. Assure that health and related systems funded with federal resources provide chronic disease management and related services for people with AD/ADRD, as well as family caregivers.
  2. Educate and clarify for health care providers and health systems how Medicare care planning and other covered benefits can be provided to a beneficiary with AD/ADRD in compliance with HIPAA, when a family caregiver is present and the individual with the disease is not.
  3. Provide full funding for the National Family Caregiver Support Program, including funding to ensure regular evaluation of the impact of the program on family caregivers for people with AD/ADRD.
  4. The process of diagnosis should include engaging individuals and families in care planning and referrals to appropriate community resources to support this planning. Care planning should address health, LTSS, caregiving resources, legal, estate planning, and finances.
  5. Provide care planning with an unpaid/family caregiver as a covered benefit under Medicare and Medicaid.
  6. Identify family/unpaid caregivers in EHRs of individuals with AD/ADRD, as well as in the caregiver's own medical records.
  7. Expand pilot payment programs in Medicare and Medicaid models that include caregiver support for patients with AD/ADRD, many of whom have complex care needs.
  8. Identify and advocate for employment practices and policies that allow employers to balance paid employment with unpaid care.
  9. Support the expansion to scale of evidence-based and evidence-informed caregiver support programs and their cultural adaptations.

ACL Response

In Response to Recommendation 11.a. People in the early stages of dementia and family caregivers of those with the condition are able to participate in chronic disease self-management education programs under ACL grants to state agencies, non-profit organizations, universities, and others. ACL encourages program outreach to these populations.

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CMS Response

CMS strives to address beneficiaries' strengths, capacities, goals, preferences, needs, and desired outcomes through a person-centered approach to care. There are occasionally special opportunities for CMS to facilitate "caregiver support" through, for example, Special Improvement Projects (Medicare QIOs), CMP funds, and other mechanisms, such as Medicaid (e.g., Health Homes, HCBS programs). There is no entitlement to caregiver support programs in Medicare, or Medicaid. In Medicaid, states may optionally choose to include services or delivery models (e.g., respite care, self-direction) that may assist caregivers.

In Response to Recommendation 11.a. Medicare may pay for a health care professional's assistance in preparing and monitoring a comprehensive care plan tailored to a beneficiary's needs if the person has two or more chronic conditions through payment for the Chronic Care Management code. The beneficiary's care plan will typically include a list of goals and problems, 24/7 access for urgent care needs, support in transitioning from one health care setting to another, review of medicines and medication management, and other chronic care needs. The service is billed monthly and the Part B deductible and coinsurance apply for Original Medicare beneficiaries. In Medicaid, states may optionally establish under the state plan Health Homes for Medicaid beneficiaries with two or more chronic conditions, or those at risk for a second chronic condition. Health home providers integrate and coordinate all primary, acute, behavioral health and LTSS in a holistic manner. In addition, some services under Medicare and Medicaid, like respite care, may be furnished to the beneficiary, yet indirectly benefit an unpaid caregiver,as well. Medicaid's PACE benefit also supports some of the care and services mentioned.

In Response to Recommendation 11.b. Beneficiaries may have a representative of their choosing who has access to information and participates in health care discussions with their knowledge and consent, as well as a legal representative such as an individual who has a power of attorney for health care, a guardian, or health care surrogate or proxy appointed in accordance with state law act on their behalf, if they are unable to make their own decisions. Advance Care Planning is covered as an optional element of the Medicare AWV, and Medicare may also cover this service if it is reasonable and necessary as part of a beneficiary's medical treatment.

Within these national coverage parameters, local Medicare contractors may make decisions about when they will pay for this voluntary service through local coverage determinations or on a case-by-case basis. Across its programs, CMS supports person-centered care, directed by the beneficiary, to identify strengths, capacities, preferences, needs, and desired outcomes. Person-centered planning includes independent facilitation, and contributors to the care plan are chosen by the beneficiary. These participants assist in identifying goals and facilitating access to the unique mix of paid and non-paid services and supports needed to assist the beneficiary in achieving individually-defined health care outcomes. CMS also encourages supported decision making (SDM), through which older adults with cognitive impairment retain choice and control over decision making in their lives and are able, with individualized assistance, to express their wants and needs in areas such as health care, financial decisions and voting rights.

In Response to Recommendation 11.d. As noted above, beneficiaries may have a representative of their choosing (including an emergency contact) who has access to information and participates in health care discussions with their knowledge and consent, as well as a legal representative such as an individual who has a power of attorney for health care, a guardian, or health care surrogate or proxy appointed in accordance with state law act on their behalf, if they are unable to make their own decisions. Medicare's Chronic Care Management and Transitional Care Management codes, the AWV, and the Advance Care Planning code include elements of the "care planning" referenced above. In Medicaid, states may elect to provide case management as part of certain benefits (e.g., PACE, HCBS programs, Health Homes, state plan service, etc.). The Financial Alignment Initiative for dually eligible beneficiaries also include elements of care planning.

In Response to Recommendation 11.e. In both Medicare and Medicaid, eligibility for a service is determined in regard to the enrolled beneficiary, not a caregiver. However, as noted above, beneficiaries may choose, through a legal representative, or through alternative means such as SDM that preserve self-determination and individual rights, to include an unpaid caregiver in care planning discussions with providers of clinical and other services.

In Response to Recommendation 11.f. As noted above, beneficiaries may have a representative of their choosing who has access to information and participates in health care discussions with their knowledge and consent, as well as a legal representative such as an individual who has a power of attorney for health care, a guardian, or health care surrogate or proxy appointed in accordance with state law act on their behalf if they are unable to make their own decisions. This person may be identified in the beneficiary's health record, at their option, or in association with a legal directive. Medicare beneficiaries also have the option of participating in Advance Care Planning (such as through the AWV), which may include the design of an advance directive. The Patient Self-Determination Act of 1990 addresses the rights of health care consumers to stipulate how they want to be treated by providers when they are incapacitated, through an advance directive, or by appointment of a health care agent. The law also requires that facilities that participate in Medicare and Medicaid must follow certain rules (e.g., maintain advance directive policies, document the existence of an advance directive in the beneficiary's medical record, and comply with relevant state law; facilities also may not condition care based on whether the beneficiary has an advance directive). CMS, through the Center for Medicaid and CHIP Services (CMCS), is presently working with nine states to create and test a structured, longitudinal, person-centered eLTSS plan for beneficiaries receiving HCBS. The eLTSS plan is to be exchanged electronically across multiple HCBS and institutional settings, and with beneficiaries and payers. The person-centered eLTSS plan will be led by the beneficiary and includes individuals chosen by the beneficiary to participate in his or her care. The standards identified for the eLTSS plan support consistent data collection and interoperable exchange with various information systems to include clinical information systems, state Medicaid and health information exchange systems, PHR systems, and other information systems (e.g., case management, legal, justice, education, protective services, etc.). CMCS is also working on development of a PHR that will provide HCBS recipients with a range of LTSS information to facilitate decision making, and encourage a more active role for beneficiaries and caregivers in managing care that will result in better outcomes.

In Response to Recommendation 11.g. CMS periodically offers opportunities for states and other entities to apply for demonstrations and models and other special initiatives through the Innovation Center, and other centers (e.g., CMCS, Center for Clinical Standards and Quality, etc.). States and accountable entities, when applying for/implementing such opportunities, also have some discretion in choosing what topics to address (e.g., AD/ADRD) within these opportunities. The Innovation Center is focused on testing new payment and service delivery models, and evaluating and sharing the results. Occasionally, there may be a "path" to wider adoption in a CMS program, should a model tested under the authority of section 1115A of the Social Security Act meet statutory criteria established in the Affordable Care Act. Such adoption would be subject to a formal rulemaking process including opportunities for public comment. Public and private payers such as state Medicaid agencies, state and local government, managed care plans, private insurers, and other entities are encouraged to review the results of CMS model testing and demonstration results, and adopt best practices.

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HRSA Response

In Response to Recommendation 11.b and 11.d. HRSA is partnering with federal partners, public and private entities, the health care provider community, and community organizations that provide LTSS to effectively educate physicians and other health care providers, direct services workers, and patients, families, and caregivers about support resources and services available to assist people with AD/ADRD and their caregivers.

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NIH Response

NIH considers research on caregivers to be a high priority and two FOAs (PAR-15-348 and PAR-15-351) were issued in September 2015 to promote research on this topic. Both of these FOAs address many of the research recommendations noted above, by focusing on developing interventions that apply across the full care continuum; defining caregiving and assessing the impact of formal and informal care over the trajectory of AD/ADRD; addressing palliative care needs and supporting caregivers in their role as surrogate decision makers; and developing financial planning interventions aimed at anticipating costs of LTSS and palliative care.

One of the these FOAs (PAR-15-348) specifically addresses the need identified in the recommendations above to expand evidence-based and evidence-informed programs, by encouraging randomized trials for comparative effectiveness research on AD/ADRD caregiver interventions, as well as partnerships with community organizations, particularly those that have potential to deliver programs at regional or national scale.

For more information, see:

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RECOMMENDATION 12

Federal agencies in partnership with national organizations and states, support research to identify standards and best practices to improve quality of life and LTSS for individuals and families affected by AD/ADRD.

  1. Provide training for paid/paraprofessional caregivers in every care setting to address cultural and dementia competence. HHS should identify model state standards of care and policies that promote fair and reasonable compensation and appropriate dementia care training.
  2. Assess and share findings on the impact of CMS's 2014 HCBS settings rule on individuals with AD/ADRD and their caregivers.
  3. Assess and share findings on the impact of states' managed LTSS systems on individuals with AD/ADRD and their caregivers.

CMS Response

In Response to Recommendation 12.a. CMS requires that providers be qualified to render covered, medically necessary services in both Medicare and Medicaid. Under Medicaid, while training costs for an individual or entity to become a qualified provider are not reimbursable costs associated with continuing education and training for Medicaid providers may in some circumstances be allowable expenses. Should a state wish to promote, for example, advanced provider skills training to increase the availability of providers qualified to serve beneficiaries with dementia, costs associated with that advanced training could be included in the development of rates paid for services requiring more complex levels of care. The state could set provider qualification requirements at a separate and distinct level for those advanced level providers, and pay higher rates. States have some flexibility within Medicaid to approach CMS to develop such programs and rates. In long-term care facilities, the Affordable Care Act requires dementia management training as part of the 12 hours per year in-service training for nurse aides.

In Response to Recommendation 12.b. CMS is monitoring implementation of the HCBS Final Rule on states and their HCBS systems (e.g., compliance with integrated settings requirements). However, CMS has no mechanism to assess and share findings on the impact of the final rule on beneficiaries with dementia, specifically -- or their caregivers. States may target certain groups of beneficiaries for HCBS programs. Only one state (Virginia) has chosen to identify AD/ADRD as a HCBS target group. CMS encourages states to apply for programs that serve beneficiaries with particular conditions, and provides technical assistance during the development process. There is currently no mechanism, however, to identify at the federal level which beneficiaries are diagnosed with a particular condition, and are also participating in a HCBS program. States may have better data on beneficiary participation and eligibility for programs designed, for example, for older adults.

In Response to Recommendation 12.c. CMS issued a comprehensive Final Rule in May 2016 for Medicaid that unifies flexible requirements across managed care authorities and recognizes that managed care is key to the provision of LTSS. As noted above, unless a state has identified beneficiaries with dementia as a target group, or otherwise flagged these individuals as an included population, CMS has no mechanism to track the impact of managed care delivery systems on individuals with dementia and/or their caregivers. (It is unclear if the referenced "caregivers" are paid caregivers, or unpaid caregivers.) If the former, CMS has some discretion in working with states to identify Medicaid providers that have the appropriate skills and/or credentials to provide covered services in development or provider qualifications.

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HRSA Response

In Response to Recommendation 12.a. As part of HRSA's GWEP, awardees educate and train caregivers. Since the start of the program in July 2015, approximately 13,384 caregivers have received training on a variety of topics. The top five training topics include: (1) the basics of AD/ADRD; (2) evidence-based programs for family caregivers; (3) promoting self-care by the caregivers; (4) community resources to support caregivers; and (5) managing dementia. The total number of caregivers predicted to be trained over the 3 years of the grant is 52,352.

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NIH Response

In September 2015, NIA and NINR issued another funding opportunity (PAR-15-350) that encourages LTSS research that focuses on the challenges faced by informal/family caregivers from diverse racial, ethnic and socioeconomic backgrounds and disparities in access to and utilization of formal long-term supports and services for those with dementia.

In addition to releasing these program solicitations, NIH staff has been engaged along with HHS leadership and representatives of multiple NGOs in discussions about the best approach to take with respect to developing a research summit focused on care and services. NIH will take the Advisory Council's recommendations regarding topics to consider for future research under advisement as it helps to plan this research summit, when it next revises its research milestones, and as it develops future Bypass Budgets for Alzheimer's Disease and Related Dementias.

For more information, see:

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