National Plan to Address Alzheimer's Disease: 2016 Update. Appendix 3: Implementation Milestones


Action Number Action Description (from Plan) Method of Action Lead Agency Partner(s) Project Completion Date/Status Activities in 2015 and 2016
Goal 1: Prevent and Effectively Treat Alzheimer's Disease and Related Dementias by 2025
Strategy 1.A: Identify Research Priorities and Milestones
1.A.1 Regularly convene an AD Research Summit to update priorities.

Summit held 2015.

Next Summit expected in 2017-2018

NIH/NIA National & international experts, public & private stakeholders, Research Subgroup, academia, industry, professional & advocacy groups

Second Summit February 2015

Next Summit Projected 2017-2018

2015 AD Research Summit
1.A.2 Solicit public & private input on AD/ADRD research priorities.

Developed recommendations & milestones from 2015 AD Research Summit based on feedback from external stakeholders.

Presented recommendations & milestones during IADRFC calls.



Recommendations--March 2015

Milestones released--July 2015

IADFRC--July 2015 (in-person meeting at AAIC); Fall 2015 conference call

2015 AD Summit Recommendations

Updated AD Research Implementation Milestones

1.A.3 Regularly update the National Plan & refine Goal 1 strategies & action items based on feedback & input. Update Goal 1 elements of the National Plan to reflect new insights & input from the community. ASPE Advisory Council, NIH/NIA & Research Subgroup Ongoing  
1.A.4 Update research priorities & milestones. Updated research priorities & milestones. ASPE Advisory Council, NIH/NIA & Research Subgroup Ongoing  
1.A.5 Create a timeline with milestones for achieving Goal 1. Create & update milestone document. NIH/NIA   Ongoing

Updated AD Research Implementation Milestones

Developed searchable AD/ADRD Research Implementation Milestones Database

1.A.6 Regularly convene an ADRD Summit to review progress on ADRD research recommendations & refine & add new recommendations as appropriate, based on recent scientific discoveries. Convene 3rd summit in 2019. NIH/NINDS Research Subgroup, academia, industry, professional & advocacy groups

Second Summit Held March 29-30, 2016

Third Summit expected 2019

The updated recommendations from ADRD 2016 Summit are expected to be approved by NINDS Advisory Council in September of 2016 & by the NAPA Council in early 2017.
1.A.7 Convene a workshop focused on research needs related to Down syndrome & AD/ADRD. Hold a workshop to solicit input on special research priorities & timelines AD/ADRD among people with Down syndrome. NIH/NIA DSRTF, RDS


10th Meeting of the Down Syndrome Consortium: A Public-Private Partnership

Input solicited on special research priorities related to Down Syndrome Research

10th Meeting of the Down Syndrome Consortium: A Public-Private Partnership

NIA & NICHD collaborated to produce & disseminate information for people with Down syndrome & their families on the interplay of these conditions & the importance of participating in research. Efforts include a fact sheet, "Alzheimer's Disease in People with Down Syndrome", & outreach via email & social media.

Strategy 1.B: Expand Research Aimed at Preventing and Treating Alzheimer's Disease
1.B.1 Expand research to identify the molecular & cellular mechanisms underlying AD/ADRD, & translate this information into potential targets for intervention. Develop an integrated interdisciplinary basic science research agenda to enable the identification & selection of therapeutic targets. NIH/NIA Potential research partners in the public & private sectors Ongoing

Release of NIH Funding Opportunity Announcements:

PAR-15-358: Capturing Complexity in the Molecular & Cellular Mechanisms Involved in the Etiology of Alzheimer's Disease (R01)

PAR-15-357: Understanding Alzheimer's Disease in the Context of the Aging Brain

PAR-15-350: Emerging Directions for Addressing Health Disparities in Alzheimer's Disease

PAR-15-349: Health Disparities and Alzheimer's Disease

AMP-AD Activities are also relevant:


1.B.2 Expand genetic epidemiologic research to identify risk & protective factors for AD/ADRD. Conduct whole genome sequencing to identify areas of genetic variation that correspond to risk factors of AD/ADRD. NIH/NIA Potential research partners in the public & private sectors Ongoing

Continue to support efforts through the Alzheimer's Disease Sequencing Project (ADSP), Alzheimer's Disease Genetics Consortium (ADGC) and NIA Genetics of Alzheimer's Disease Data Storage Site

Data are available for 15,630 subjects (cases, controls & family members) including phenotype & individual-level information.




1.B.3 Increase enrollment in clinical trials & other clinical research through community, national, & international outreach. Identify approaches & coordination points for these efforts; develop an action plan that incorporates these ideas; collaborate to increase awareness among health & social service providers. NIH/NIA, ACL, CDC, VA FDA, VA, CDC, HRSA, CMS, in partnership with the private sector Ongoing

Alzheimer's Disease Cooperative Study

In 2015, the ROAR team continued to promote a toolkit of customizable materials for aging services and public health professionals to use in community settings and social media, and expanded the potential reach by translating materials into Spanish and Chinese.

NIA's ADEAR Center developed a web mini-portal in 2015 for encouraging participation in Alzheimer's research.

ADEAR sends out monthly e-alerts to nearly 35,000 subscribers announcing new recruiting trials and featuring registries and matching services such as the Alzheimer's Prevention Registry and Brain Health Registry.

In 2016, NIA is joining collaborative efforts with FDA and the PCORI-funded Alzheimer's and Dementia Patient/Caregiver-Powered Research Network to encourage research participation.

1.B.4 Monitor & identify strategies to increase enrollment of racial & ethnic minorities in AD/ADRD studies. Track enrollment in NIH AD/ADRD studies; identify & implement next steps for engaging & enhancing research participation by racial & ethnic minorities; raise awareness of need for participation. NIH/NIA, NIH/NIMHD ACL Ongoing

PAR-15-350: Emerging Directions for Addressing Health Disparities in Alzheimer's Disease

PAR-15-349: Health Disparities & Alzheimer's Disease

In 2015, ROAR team continued to promote a toolkit of customizable materials for aging services & public health professionals to use in community settings & social media, & expanded the potential reach by translating materials into Spanish & Chinese.

1.B.5 Conduct clinical trials on the most promising pharmacologic interventions. Identify partnerships with private sector participants to voluntary share information about new & ongoing clinical trials. Develop partnerships to better coordinate federal & private sector review of the status & progress of the trials & emerging opportunities. Review the status & progress of clinical trials annually. NIH/NIA VA Ongoing

FOAs for clinical trials have been released: PAR-16-364:

Phase III Clinical Trials for the Spectrum of Alzheimer's Disease & Age-related Cognitive Decline

PAR-16-365: Pilot Clinical Trials for the Spectrum of Alzheimer's Disease & Age-related Cognitive Decline

See also AMP:


An updated list of NIA-supported clinical trials can be found in the 2014-2015 Alzheimer's Disease Progress Report

Coordination of federal, non-federal, & international AD/ADRD research, including clinical trials, can be found in the IADRP

1.B.6 Continue clinical trials on the most promising lifestyle interventions. Conduct annual reviews of the status & progress of clinical trials. NIH/NIA VA Ongoing

Trials are ongoing & planned; vehicles for inventorying trials are in place.

New FOAs include:

PAR-16-364: Phase III Clinical Trials for the Spectrum of Alzheimer's Disease & Age-related Cognitive Decline

PAR-16-365: Pilot Clinical Trials for the Spectrum of Alzheimer's Disease & Age-related Cognitive Decline

The annual list of ongoing AD/ADRD trials is available in the 2014-2015 Alzheimer's Disease Progress Report

Development of the IADRP will facilitate tracking research efforts, including treatment studies.

Strategy 1.C: Accelerate Efforts to Identify Early and Presymptomatic Stages of Alzheimer's Disease
1.C.1 Identify imaging & biomarkers to monitor disease progression. Conduct annual reviews of ADNI to identify & monitor disease progression. NIH/NIA ADNI Partners Ongoing

Ongoing reporting & monitoring of ADNI activities, continuing on an annual basis, along with provision of research funding on developing & testing diagnostic tools.

ADNI's activities are & will continue to be monitored & reviewed on an annual basis

PAR-15-359: Novel Approaches to Diagnosing Alzheimer's Disease & Predicting Progression

PAR-15-350: Emerging Directions for Addressing Health Disparities in Alzheimer's Disease

PAR-15-349: Health Disparities & Alzheimer's Disease

1.C.2 Maximize collaboration among federal agencies & the private sector. Identify additional partnership opportunities with the private sector & facilitate collaborative efforts to enhance identification of risk factors & early biomarkers. NIH/NIA FDA, CMS Ongoing

NIH, FDA, 10 biopharmaceutical companies, & multiple non-profit organizations launched an unprecedented public-private partnership in February 2014. One of the main goals of this effort is to identify biomarkers for AD/ADRD.


AMP-AD (Projects A & B)

Strategy 1.D: Coordinate Research with International Public and Private Entities
1.D.1 Inventory AD/ADRD research investments. International Alzheimer's Disease Research Database launched July 2012 & continually updated. NIH/NIA   Ongoing IADRP now includes data from 35 public & private funding organizations across 10 countries.
1.D.2 Expand international outreach to enhance collaboration. Invite international colleagues to meet & discuss AD/ADRD research priorities & collaboration through regular meetings in person & via teleconference. NIH/NIA   Ongoing Alzheimer's Disease Funders' meeting held during the 2015 AAIC; quarterly funders calls led by NIA & Alzheimer's Association. Also, IADRP which includes data from 35 public & private funding organizations across 10 countries is publicly-available for use.
Strategy 1.E: Facilitate Translation of Findings into Medical Practice and Public Health Programs
1.E.1 Leverage public & private collaborations to facilitate dissemination, translation, & implementation of research findings. Disseminate research findings through various media & in partnership with organizations, particularly those involving interventions in treatment & care. NIH/NIA FDA, ACL, CDC, partner organizations Ongoing

NIA continues to expand our efforts to educate clinicians about recent research findings; clinical practice tools for assessment, diagnosis & management of cognitive impairment; training materials; & other resources. In 2015, NIA developed a mini-portal of resources for professionals, including the clinician quick guides "Assessing Cognitive Impairment in Older Adults" & "Managing Older Patients with Cognitive Impairment."

1.E.2 Continue to promote use of ADEAR to educate the public about the latest research findings. Prepare & disseminate regular reports on AD/ADRD research findings. NIH/NIA NIH/NIA ADEAR, ACL, CDC, FDA, CMS, HRSA, VA, partner organizations Ongoing

NIA routinely disseminates information on ADRD research findings.

ADEAR Center

2014-2015 AD Progress Report

1.E.3 Issue guidance about drugs for early stage AD/ADRD. Issue recommendations about standards for evaluating the effectiveness of treatments for early stage AD/ADRD. FDA   Ongoing Draft Guidance for Industry: Alzheimer's disease: Developing Drugs for the Treatment of Early Stage Disease
1.E.4 Expand & disseminate research on co-occurring conditions & dementias. Literature review to be disseminated through CDC's public health network, AoA's Aging Network, & NIA research network. CDC ACL/AoA, NIH/NIA Ongoing In January 2016, CDC released the Progress Report of public health Road Map action item accomplishment & next steps. In 2017, the development process will begin on the 3rd Road Map that will identify action items for public health professionals related to cognitive health.
1.E.5 Provide information to the public on brain health. Develop & disseminate a brain health resource to aging, disability, & public health professionals. ACL/AoA, NIH/NIA, NIH/NINDS, CDC CMS, HRSA, VA, private partners Ongoing

On February 2, 2016, NINDS launched a public health campaign on link between hypertension & cognitive decline for integration with the HHS Million Hearts Campaign.

The Brain Health Resource, a presentation toolkit on brain health as we age, was developed by ACL with NIH & CDC for use at senior centers & in other community settings. Written in plain language, the evidence-based resource explains what people can do to help keep their brains functioning best. In 2016, the toolkit was expanded to include materials in Spanish & a new brain health module entitled, Medicine, Age, & Your Brain.

Goal 2: Enhance Care Quality and Efficiency
Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care
2.A.1 Educate health care providers. Educate providers through HRSA's Geriatrics Centers about how to: (1) work with people with the disease, & their families, (2) link people to support services in the community, identify signs of caregiver burden & depression, & (3) detect cognitive impairment & assess/diagnose AD/ADRD. HRSA CMS, NIH/NIA, CDC collaboration Ongoing

Progress report for the 1st 6 months of funding:

This is an interim report. Between July 1, 2012, & December 31, 2012, the 45 GECs provided 178 interprofessional continuing education offerings & trained 10,976 participants. Each event trained participants 2-25 different health professions. 248 community partners participated with GEC grantees in providing this training including 28 QIOs, 15 Alzheimer's Association Chapters, 8 Area Health Education Centers, & 8 Veterans Administration Medical Centers.

NIA produced & disseminated Assessing Cognitive Impairment in Older Patients: A Quick Guide for Primary Care Physicians

2.A.2 Encourage providers to pursue careers in geriatric specialties. Educate providers about opportunities through: (1) the CGEP, (2) the Geriatric Academic Career Awards Program; & (3) training projects that provide fellowships for individuals studying to be geriatricians, geriatric dentists, or geriatric psychiatrists. HRSA   Ongoing

18 CGEP grants awards were made with a start date of July 1, 2012. Of the 18 awards, 12 include support for 66 advanced practice nursing traineeships with a specialty in care of the older adult. All trainees are receiving a significant amount of education on assessing & caring for the individual with dementia, including consideration of their families & caregivers. 33 faculty members are also receiving training to improve their skills related to the assessment and care of persons with dementia.

In addition, 2,462 practicing health care providers, caregivers, and community members received participated in continuing education offerings on AD/ADRD. GTPD programs: 12 grants are currently being funded through the GTPD program.

Starting July 1, 2012, 54 fellows received didactic & clinical experiences on the diagnosis & management of dementia. In addition, grantees trained an additional 330 learners by involving fellows in outreach & education. For example, 1 grantee involves the fellows in providing community education on dementias, & another is supporting a second year fellow in developing a curriculum for caregivers of persons with dementia.

There is a significant level of collaboration among GTPD grantees & GECs & the Alzheimer's Association on continuing education activities. In some instances, fellows attend continuing education programs on dementia, & in others, they are the instructors & presenters for such programs. Several grantees are involving their GTPD fellows in educating pre-licensure medical & dental students, using their experiences in managing dementia to provide didactic lectures to students.

2.A.3 Strengthen state aging, public health, & IDD workforces. Educate the workforces through various means including online training, webinars, fact sheets & other tools. HRSA ACL/AoA Ongoing

HHS will coordinate with states to develop workforces in aging, public health, & IDD that are AD-capable & culturally-competent. ACL collaborated with HRSA to provide AD/ADRD training to the Aging Network. One example is the New Jersey GEC, which provided a series of trainings to the Aging Services Network in August/September 2015. Over 2,100 health professional & caregivers from the AAAs participated in the trainings. In addition, HRSA GWEP awardees are collaborating with 26 AAAs & 13 QIOs to strengthen state aging, public health, & IDD workforces.

AoA has a person-centered counseling program, which includes education about cognitive issues & dementia-capability. Training programs will be pilot-tested in 2016

2.A.4 Develop & disseminate a voluntary unified primary care AD/ADRD curriculum. Develop a voluntary curriculum for primary care practitioners. HRSA CMS, NIH/NIA, VA September 2016  
2.A.5 Ensure aging & public health network providers have access to research-based up-to-date information on AD/ADRD. Webinars with representatives from the Aging Network, ADCs, ADEAR, the National Alzheimer's Call Center & Elder Locator, & other federal partners to ensure aging & public health workforces receive recent, updated & culturally-competent information. ACL/AoA, NIH/NIA CDC Ongoing

Free continuing education is available to professionals who need it when they view recorded webinars. This continuing education is available through 2016.

The interagency ROAR (NIH, ACL, CDC) group hosted a 4th annual webinar series in 2015 for these professionals on AD/ADRD & caregiving resources, current research studies, & caregiver support programs that drew record attendance (500+ participants for each of 3 webinars) & offered continuing education credit.

2.A.6 Engage the public health workforce on brain health. Conduct briefings with federal, state, & local public & private partners regarding the Healthy Brain Initiative: The Public Health Road Map for State & National Partnerships, 2013-2018. CDC ACL, NIH/NIA Ongoing CDC in collaboration with the HBRN has developed a Scholars Program to assist in the training of graduate-level students in brain health. Students engage in a variety of educational, partnership, & research activities. This program in year 2 of a 5-year funding cycle.
2.A.7 Strengthen the ability of primary care teams in Indian Country to meet the needs of people with AD/ADRD & their caregivers. Incorporate training for AD/ADRD into the online continuing education curriculum for IHS/Tribal/Urban program nursing. IHS   Ongoing Web-based course on AD/ADRD April-June 2016 IHS Clinical Rounds. On agenda of IHS Nursing Leadership meeting May 17, 2016. Clinical training track in planning on diagnosis & management of AD/ADRD for ACL/IHS/CMS LTSS conference, November 2016. Banner Alzheimer's Institute National Alzheimer's meeting October 2015. Review of online IHS nurse training resources completed.
2.A.8 Develop a baseline understanding of self-reported competence & confidence of IHS, Tribal & Urban Indian Health nursing staff in care of individuals with dementia. Assess nursing in IHS, Tribal, & Urban Indian Health programs on self-reported competence, confidence, & recent training specific to care for individuals with dementia. IHS   Ongoing  
2.A.9 Improve educational resources for primary care staff caring for individuals with dementia & their family. Pilot-test the HRSA curriculum for care of AD/ADRD in IHS, Tribal, & Urban Indian Health Programs. IHS HRSA Ongoing Pilot-test in 6 sites.
2.A.10 Decision Support for Clinicians. Develop & pilot-test decision support tools for clinicians using the IHS EHR. IHS   Ongoing Pilot-test in 6 sites.
2.A.11 Interdisciplinary Team Training in recognition, assessment, & management of dementia in small rural Indian Health facilities. Provide the VA Rural Interdisciplinary Team Training to 10 IHS & Tribal sites with a focus on dementia care. IHS VA Ongoing 20 sites by September 2017.
2.A.12 Strengthen states' ability to provide & sustain dementia-capable HCBS. Grants to states & technical assistance on high-quality person-centered dementia care. Develop learning collaboration & tool to evaluate dementia-capability. ACL/AoA CMS Ongoing Products in 2015 include: Tools for Screening, Identification, Referral, & Care Planning for People with Alzheimer's Disease & Their Caregivers.
2.A.13 Fill service gaps in dementia-capable systems by expanding the availability of specialized services & supports to target previously underserved populations. Grants to states & localities. ACL/AoA CMS Ongoing This is an ongoing project assuming continuing congressional appropriations.
2.A.14 Strengthen the long-term care workforce. Provide technical assistance to states. DoL, CMS HHS Technical assistance ongoing Final Rule issued October 2013.
2.A.15 Improve HCBS LTSS provided through state Medicaid waivers. Hold webinars, national calls, & provide information to key stakeholders. CMS   Ongoing

The CMS Medicaid IAP is supporting state Medicaid agencies in community integration through LTSS. One targeted area of support is helping a select number of Medicaid agencies plan & implement quality & outcome incentives in their community-based LTSS programs.

2.A.16 Disseminate CMS Hand-in-Hand dementia training materials in VA Community Living Centers. Share with federal partners a summary report on implementation & evaluation of VA's dissemination of CMS Hand-in-Hand dementia training materials in VA Community Living Centers. VA ASPE, CMS, ACL, HRSA Ongoing  
Strategy 2.B: Ensure Timely and Accurate Diagnosis
2.B.1 Identify & disseminate a variety of appropriate assessment tools. Identify a variety of appropriate assessment tools that can be used in a variety of outpatient settings, including the Medicare AWV, to assess cognition. Complete the development of the "toolbox" of cognitive assessment tools. Disseminate recommended tools to practitioners. CMS, NIH/NIA CDC Ongoing

The CMS Medicaid IAP is supporting state Medicaid agencies in community integration through LTSS. One targeted area of support is helping a select number of Medicaid agencies plan & implement quality & outcome incentives in their community-based LTSS programs.

Searchable database of assessment tools

Updated fact sheet on the AWV for FFS Medicare providers

In 2015, NIA developed a mini-portal of resources for professionals, including the clinician quick guides "Assessing Cognitive Impairment in Older Adults" & "Managing Older Patients with Cognitive Impairment."

2.B.2 Educate family members of & service providers for persons with IDD about changes that may indicate the onset of dementia. Develop fact sheets & tools to aid in identifying the onset of dementia. ACL/AIDD National Task Group on Intellectual Disabilities & Dementia Practice Ongoing

2 webinars & an issue paper were made available in 2015.

Resources: Webinar: IDD & Dementia--California Webinar

2.B.3 Increase awareness of AD/ADRD in Tribal & Urban Indian Communities & of the availability of services for Individuals with dementia & their families. Pilot-test AD/ADRD awareness strategies in communities in which REACH into Indian Country is implemented, through both health care & aging services settings. IHS ACL Ongoing  
Strategy 2.C: Educate and Support People with Alzheimer's Disease and Their Families upon Diagnosis
2.C.1 Educate physicians & other health care providers about accessing LTSS. Increase knowledge of available resources among doctors, nurses, & hospitals. HRSA CMS, VA, ACL Ongoing One barrier to counseling & support is that health care providers are not aware of available services or how to access them. To increase knowledge of these resources among physicians, nurses, & hospitals, HRSA is partnering with federal partners, public & private entities, the health care provider community, & community organizations that provide LTSS to effectively educate physicians & other health care providers, direct services workers, & patients, families, & caregivers about support resources & services available to assist people with AD/ADRD, as well as their caregivers. These activities will continue as part of the training in Action 2.A.1.
2.C.2 Connect American Indians & Alaska Natives to AD/ADRD resources. As new resources become available, they will be distributed through a variety of venues to Indian Country. IHS ACL/AoA, NIH/NIA Ongoing The focus on increasing support to caregivers has been through spread of REACH into Indian Country, with the goal of offering this intervention to those with AD/ADRD & their families.
Strategy 2.D: Identify High-Quality Dementia Care Guidelines and Measures Across Care Settings
2.D.1 Explore dementia care guidelines measures. Convene meetings with public & private organizations to discuss dementia care practices; develop/identify 3-5 evidence-based guidelines of best dementia practices; include guidelines in the National Guidelines Clearinghouse; disseminate guidelines to consumer & clinical stakeholders, as well as quality measure developers. CMS ASPE, AHRQ Ongoing  
2.D.2 Solicit stakeholder input on meaningful outcomes to drive quality measurement. Convene listening sessions with relevant stakeholders. CMS ASPE Ongoing Initial target met; continuing work of reviewing literature & guidelines continues to support quality measure development & implementation.
Strategy 2.E: Explore the Effectiveness of New Models of Care for People with Alzheimer's Disease
2.E.1 Evaluate the effectiveness of relevant CMMI models for people with AD/ADRD. Examine changes in care quality & care coordination among people with AD/ADRD. CMS/CMMI NIH/NIA Ongoing At this time CMS has several HCIAs that impact people with AD/ADRD & their caregivers. The evaluation results were released in May 2016 (see Plan updates).
2.E.2 Evaluate the effectiveness of the Independence at Home Demonstration. Examine whether health & functional status outcomes are improved among people with AD/ADRD in this demonstration. CMS/CMMI   Ongoing  
2.E.3 Develop a SDM model as an alternative to guardianship. Support a national training, technical assistance, & resource center to explore & develop SDM as an alternative to guardianship. ACL/AoA   Started in 2015, expected completion in 2019

2.E.4 Analyze new payment & service options for Medicare-Medicaid dual eligible beneficiaries. Produce targeted research issue briefs on options for expanding PACE. ASPE   Ongoing  
2.E. 5 Analyze "quality dementia care" practices across settings. Case studies conducted across settings to better understand what innovative dementia care providers are doing to provide quality care. ASPE   Report expected September 2016  
2.E.6 Analyze reimbursements for high-quality, community-based, ambulatory mental health & substance use disorder services. 2 year demonstration program of Certified Community Behavioral Health Clinics. ASPE SAMHSA Ongoing
Strategy 2.F: Ensure that People with Alzheimer's Disease Experience Safe and Effective Transitions between Care Settings and Systems
2.F.1 Implement & evaluate new care models to support effective care transitions for people with AD/ADRD. Evaluate care transition demonstration programs. CMS ACL/AoA Ongoing  
2.F.2 Assess the adequacy of HIT standards to support the exchange of information at times of referrals & transitions in care for persons with AD/ADRD. Convene partners to explore feasibility & timing. ASPE ONC, CMS Ongoing  
Strategy 2.G: Advance Coordinated and Integrated Health and Long-Term Services and Supports for Individuals Living with Alzheimer's Disease
2.G.1 Implement & evaluate care coordination models. Implement & evaluate care coordination models. CMS/CMMI   Ongoing

HCIAs Rounds 1 & 2 in process; Medicare & Medicaid Coordination Office demonstration projects started.

2.G.2 Evaluate evidence on care integration. Issue report on findings. ASPE   Ongoing  
2.G.3 Assess the adequacy of HIT standards for care plans to support the needs of persons with AD/ADRD. Convene partners to explore feasibility & timing. ASPE ONC Ongoing  
Strategy 2.H: Improve Care for Populations Disproportionally Affected by Alzheimer's Disease and for Populations Facing Care Challenges
2.H.1 Create funding opportunities for organizations to improve care for these specific populations. Fund dementia-capable systems to implement new programs designed to provide more effective services to: (1) individuals living alone in the community with dementia; (2) individuals with IDD who have or are at risk of developing dementia; (3) caregivers who need behavioral symptom management training or expert consultations to help them care for family members; & (4) provision of effective care/supportive services for individuals living with moderate to severe AD/ADRD & their caregivers. ACL/AoA   Ongoing

ACL awarded 11 grants in 2015.

ACL anticipates awarding 10 new grants in 2016. Note that future grants are contingent on availability of funding.

2.H.2 Enhance understanding of models of family support for people with IDD as they age. Explore promising models, release report. ASPE   Ongoing  
2.H.3 Compare outcomes for dual eligible beneficiaries in integrated care models. Determine the feasibility of an analysis that compares selected health outcomes & quality measures for Medicare-Medicaid dual eligible beneficiaries participating in managed care models. ASPE   Ongoing  
Goal 3: Expand Supports for People with Alzheimer's Disease and Related Dementias and Their Families
Strategy 3.A: Ensure Receipt of Culturally Sensitive Education, Training, and Support Materials
3.A.1 Distribute materials to caregivers. Distribute training & education materials through federal agencies & state & local networks. ACL NIH/NIA, ADEAR Ongoing

Networks serving caregivers have frequent opportunities for webinars, consultation, & grants to better serve caregivers.

Fact sheets

3.A.2 Utilize HIT for caregivers & persons with AD/ADRD. Identify tools, evaluate, & disseminate findings. AHRQ  

Completion expected July 2016

Ongoing, completion expected 2019

Grant awarded (#1P50 HS 019917) & used to create Elder Tree, a suite of electronic services to support older adults & their caregivers. The Elder Tree tool is being evaluated. Recruited 400 people who have used the suite, participants were surveyed. Analysis underway & results will be available by July 2016.

Grant awarded (#5R18HS027836) to evaluate use of remote sensory technology to help manage persons with AD/ADRD & study impact on ability of caregivers to manage family member with AD/ADRD. Recruited 60 caregivers, systems installed & caregivers trained. The recruitment goal is 100.

Strategy 3.B: Enable Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being
3.B.1 Develop & disseminate evidence-based interventions for people with AD/ADRD & their caregivers. Identify specific evidence-based interventions that can be developed into training materials or new programs; develop training materials and/or design intervention programs based on NIH/NIA research. NIH/NIA AHRQ, CMS, CDC, ACL/AoA Ongoing

Release of 2 highly relevant PARs:

PAR-15-348: Research on Informal & Formal Caregiving for Alzheimer's Disease (R01)

PAR-15-351: Research on Informal & Formal Caregiving for Alzheimer's Disease (R21) released.

  • NIA staff has had several discussions with AoA staff about interventions that might be ready for dissemination within the AoA network.
  • NIA & AoA have jointly supported a FOA for translation of evidence-based research.
  • NIA staff have participated in numerous meetings with AoA to share information & discuss opportunities to work together on dissemination of interventions within the AoA network.
3.B.2 Provide effective caregiver interventions through AD-capable systems. Work with states to identify caregiver interventions for dissemination. ACL/AoA   Ongoing New grants are awarded each year as funding permits.
3.B.3 Collaborate to share information on LTSS with Tribal providers. Various dissemination mechanisms such as webinars & sharing materials with relevant networks. ACL/AoA IHS, CMS Ongoing Presentations occur at Indian Country meetings & webinars.
3.B.4 Continue to promote use of the National Alzheimer's Call Center to provide information, advice, & support to people with dementia or their caregivers. AoA will continue to contribute funding to this public-private effort. ACL/AoA Alzheimer's Association Ongoing AoA will continue to contribute funding to this public-private effort, assuming Congressional appropriations continue.
3.B.5 Make behavioral symptom management education & training available to caregivers. Award grants. ACL/AoA CMS Ongoing 2015 grants made & more anticipated in 2016
3.B.6 Examine technological solutions to support family caregivers. Grant awarded--awaiting results. AHRQ   December 2019 Grant awarded (#5R18HS027836) to evaluate use of remote sensory technology to help manage persons with AD/ADRD & study impact on ability of caregivers to manage family member with AD/ADRD. Recruited 60 caregivers, systems installed & caregivers trained. The recruitment goal is 100.
3.B.7 Adapt & Implement REACH in Tribal Communities. Working in partnership with ACL the University of Tennessee Health Sciences Center, & the Rx Foundation implement the REACH intervention as REACH into Indian Country. IHS ACL/AoA. VA, University of Tennessee Health Sciences Center Ongoing

Baseline in February 2015 was 3 communities (the REACH VA Pilot Sites).

Implementation in 50 Tribal communities by February 2018.

3.B.8 Determine economic impacts of programs to support informal caregivers. Provide a framework for policy makers to begin to estimate costs & benefits of policies & programs aimed to help caregivers. ASPE   Ongoing  
Strategy 3.C: Assist Families in Planning for Future Care Needs
3.C.1 Understand how families find & access LTSS. Exploratory qualitative research project to examine where families gather information, how they make decisions, how well arrangements work, & how local factors influence the process. ASPE   Ongoing  
3.C.2 Understand long-term care financing & service delivery models. Development of series of long-term care financing proposals through actuarial & micro-simulation modeling. ASPE   Ongoing  
Strategy 3.D: Maintain the Dignity, Safety and Rights of People with Alzheimer's Disease
3.D.1 Monitor, report & reduce inappropriate use of antipsychotics in nursing homes. National Partnership to Improve Dementia Care. CMS ACL/AoA, NORC Ongoing

CMS continues to make progress on the National Partnership to Improve Dementia Care. In 2011-Q4, 23.9% of long-stay nursing home residents were receiving an antipsychotic medication; since then there has been a decrease of 28.8% to a national prevalence of 17% in 2015-Q4. Success has varied by state & CMS region, with some states & regions having seen a reduction of greater than 20%.

Information for Ombudsman Program

Other information

3.D.2 Incorporate elder abuse awareness into Aging Network activities. Eldercare Locator & other Aging Network & prevention programs providers to recognize warning signs of abuse. ACL/AoA Private partner/grantees Ongoing  
3.D.3 Translate & disseminate information on abuse of people with dementia. Create & disseminate research briefs, fact sheets & webinars. ACL/AoA NIH/NIA, DoJ, private partners Ongoing Conducted NIH Workshop on Multiple Approaches to Understanding & Preventing Elder Abuse
3.D.4 Improve the ability of legal services to address the needs of people with AD/ADRD. Award, monitor, & report on demonstration grants. Revise NLRC website. ACL/AoA Legal assistance developers, NLRC Ongoing New contract for the National Center on Law & Elder Rights & new grants are available under the Model Approaches program
3.D.5 Develop public-private partnerships to combat abuse & exploitation of Social Security beneficiaries. An interagency, public-private partnership program to address abuse & exploitation of individuals who are incapable of managing their finances. SSA ACL/AoA, CNCS, CFPB, SSA Ongoing Volunteer Representative Payee Pilot Program results include the development & testing of protocols & materials to assist in the identification & training of individuals to serve as volunteer representative payees. Once the modules are complete, SSA will conduct a media campaign to build awareness of the pilot's results.
3.D.6 Educate law enforcement about interacting with AD/ADRD. Educate law enforcement & public safety professionals about how to interact appropriately with missing persons with AD/ADRD. DoJ   Ongoing March 2016: Launch of 10 regional Elder Justice Task Forces. These teams will bring together federal, state & local prosecutors, law enforcement, & agencies that provide services to the elderly, to coordinate & enhance efforts to pursue nursing homes that provide grossly substandard care to their residents.
3.D.7 Work with communities to develop best practices for protecting people with AD/ADRD. A guide to educate law enforcement & inform communities, families & caregivers about best practices for protecting persons with AD/ADRD & preventing them from wandering & becoming lost. DoJ   Ongoing DoJ Elder Abuse Information
Strategy 3.E: Assess and Address the Housing Needs of People with Alzheimer's Disease
3.E.1 Understand use of Medicare & Medicaid funded health services among older adults in HUD-assisted housing. Analyze health care utilization & spending among Medicare & Medicaid beneficiaries in HUD-assisted housing. ASPE, HUD  

Part 1 completed 2014

Part 2 expected 2016

Part 1: Picture of Housing & Health: Medicare & Medicaid use of Older Adults in HUD-Assisted Housing

Part 2: Publication expected later in 2016.

3.E.2 Evaluate SASH program. Analyze the SASH program model of coordinated health & supportive services within affordable housing settings. ASPE  

First Report: 2014

Second Report: 2016
3.E.3 Understand & analyze unlicensed care homes. Exploratory study to understand how unlicensed care homes function as a residential care option, the types of individuals who reside in them, & their characteristics including quality & safety policies that influence the supply & demand for these homes. ASPE   Report completed 2016
Goal 4: Enhance Public Awareness and Engagement
Strategy 4.A: Educate the Public about Alzheimer's Disease
4.A.1 Design & conduct a national education & outreach initiative. Plan, fund, & implement AD/ADRD awareness activities, in racially and ethnically diverse populations. CDC   Ongoing CDC in partnership with the Balm in Gilead is educating African Americans about cognition & brain health through faith-based organizations & medical organizations. Additionally, HBRN is conducting a series of focus groups to test educational messages in racially, ethnically, and geographically diverse samples.
4.A.2 Enhance public outreach about AD/ADRD. Update website & ADEAR site/publications & disseminate information through social media. ACL/AoA NIH/NIA   Ongoing

NIA operates ADEAR Center, the primary Federal Government resource for information about AD/ADRD, research, & caregiving. The ADEAR Center educates the public about the latest research findings & provides evidence-based information online, in print & via a call center. Information about AD/ADRD, participation in clinical trials, & caregiving is freely available. NIA promotes ADEAR's resources through outreach in the research & care communities & through the media & advocacy organizations, via weekly e-alerts to more than 50,000 subscribers, & social media outreach to more than 10,000 followers.

4.A.3 Expand access to treatment for people with mental health & substance use disorders. Maintain the Mental Health & Substance Use Disorder Parity Task Force. The Task Force will focus key federal agencies on the work of ensuring that Americans receive the coverage & treatment that they need. ASPE DoT, DoD, DoJ, DoL, VA, OPM, ONDCP Ongoing Presidential Memorandum--Mental Health & Substance Use Disorder Parity Task Force
Strategy 4.B: Work with State, Tribal, and Local Governments to Improve Coordination and Identify Model Initiatives to Advance Alzheimer's Disease Awareness and Readiness across the Government
4.B.1 Continue to convene federal partners. Convene to share research findings, innovative or best practices, & information about new or upcoming initiatives. ASPE CDC, NIH/NIA, ACL/AoA, CMS, HRSA, AHRQ, IHS, SAMHSA, OASH, VA, NSF, DoD Ongoing  
4.B.2 Build upon lessons learned to improve the dementia-capability of state & local service systems. Expand Dementia-Capability Toolkit to include educational materials on identifying persons with cognitive impairment, direct links to tools, & examples of best practices in other states. ACL/AoA CMS Ongoing

ADSSP learning collaborative results

ADSSP & ADI-SSS grantees & their Resource Center provide new & improved resources every year.

4.B.3 Get Tribal input on AD/ADRD. Convene Tribal leaders. IHS ASPE, ACL/AoA Ongoing  
4.B.4 Support improved coordination between IHS, Tribal, & Urban Indian Health programs & the Tribal Aging Network around 4 person-centered goals. Improve coordination between IHS, Tribal, & Urban Indian Health programs & the Tribal Aging Network around 4 person-centered goals. IHS ASPE, ACL/AoA Ongoing  
IHS & ACL will adapt the VA approach to dementia warning signs & pilot-test it in clinical & community-based settings. IHS & ACL will partner with AD/ADRD advocacy organizations to link state & local chapters with Tribal Senior Centers & IHS, Tribal, & Urban Indian Health Programs. IHS, ACL/AoA VA Ongoing  
Strategy 4.C: Coordinate United States Efforts with Those of the Global Community
4.C.1 Work with global partners to enhance collaboration. Convene global partners in collaboration with G8 Dementia Summit. ASPE   Ongoing United States participated in legacy meetings throughout 2014. United States hosted the final legacy meeting in February 2015, & was represented at the WHO Dementia meeting in Geneva in March 2015.
Goal 5: Improve Data to Track Progress
Strategy 5.A: Enhance the Federal Government's Ability to Track Progress
5.A.1 Identify needed changes or additions to data. Work with federal partners & researchers. ASPE CMS, CDC, NIH/NIA, ACL/AoA, VA, IHS Ongoing  
5.A.2 Make needed improvements to data. Develop questions to be fielded for data collection. Add to surveys. ASPE CDC/NCHS, NIH/NIA Ongoing  
5.A.3 Summarize data on cognitive impairment across states. Report on 2012 BRFSS data on perceptions about increased confusion & memory loss. CDC   Ongoing The 2013 data was recently analyzed & state-specific reports were developed & released. 2015 data was collected in 35 states & releases will begin in fall 2016.
5.A.4 Develop & disseminate measures of awareness of AD. Release report on validated survey questions. CDC   Ongoing  
5.A.5 Summarize existing data on people with AD/ADRD & their caregivers. Develop & release chartbook. ASPE CDC/NCHS, NIH/NIA, ACL/AoA Ongoing CDC is developing a brief report/fact sheet summarizing results from 2011-2013 BRFSS caregiver module with respect to those caring for person with AD/ADRD. The documents will be released in late 2016. Results from the 24 states who administered the BRFSS caregiving module in 2015 will begin to be released in late 2016.
5.A.6 Develop a consistent set of ICD-9/ICD-10 codes for AD/ADRD for federal agencies to use in analyses of administrative data. Convene interagency group to reach consensus. Crosswalk to ICD-10 codes. ASPE CMS, VA, NIH, IHS Ongoing  
Strategy 5.B: Monitor Progress on the National Plan
5.B.1 Track plan progress. Track progress on the plan, & incorporate measures into other efforts to monitor population health such as Healthy People 2020. ASPE   Ongoing  
5.B.2 Update the National Plan annually. Release updated National Plan. ASPE   Ongoing