NATIONAL PLAN TO ADDRESS ALZHEIMER'S DISEASE: 2017 UPDATE. Appendix 3: Implementation Milestones

09/01/2017

Action Number Action Description
(from Plan)
Method of Action Lead Agency Partner(s) Project Completion Date/Status Activities in 2016 and 2017
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.

Summit scheduled for March 1-2, 2018.

NIH/NIA

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

Second Summit February 2015

Third Summit March 2018

2015 AD Research Summit
http://www.nia.nih.gov/about/events/2014/alzheimers-disease-research-summit-2015

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.

NIH/NIA

 

Ongoing

Recommendations--March 2015

Milestones released--July 2015

Recommendations & Milestones will be updated following the next Summit in March 2018

2015 AD Summit Recommendations
https://www.nia.nih.gov/research/recommendations-nih-ad-research-summit-2015

2017 National Research Summit on Care, Services and Supports for Persons with Dementia and their Caregivers
https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers

Updated AD Research Implementation Milestones
https://www.nia.nih.gov/alzheimers/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, NIH/NINDS

 

Ongoing

Updated AD Research Implementation Milestones:

Full set of milestones through 2025
https://www.nia.nih.gov/alzheimers/milestones

2018 Milestones
https://www.nia.nih.gov/sites/default/files/AD/FY2018-Alzheimers-Disease-Related-Dementias-Budget-Bypass-Milestones-508.pdf

2019 Milestones
https://www.nia.nih.gov/sites/default/files/2017-07/FY2019-AD-ADRD-Milestones.pdf

Updated the searchable AD/ADRD Research Implementation Milestones Database
https://aspe.hhs.gov/alzheimers-disease-related-dementias-adrd-summit-2016-prioritized-research-milestones

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 third 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 were approved by NINDS Advisory Council in September 2016 & presented to the NAPA Council in February 2017. Final recommendations became the ADRD Summit 2016 Prioritized Research Milestones, which can be found here: https://aspe.hhs.gov/alzheimers-disease-related-dementias-adrd-summit-2016-prioritized-research-milestones.

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

Ongoing

11th Meeting of the Down Syndrome Consortium: A Public-Private Partnership

Input solicited on special research priorities related to Down syndrome research.

11th Meeting of the Down Syndrome Consortium: A Public-Private Partnership including several NIH ICs (NICHD, NCI, NHLBI, NHGRI, NIDCR, NIDCD, NIDDK, NIMH, NINDS, NIA, & NIMHD)
https://downsyndrome.nih.gov/meetings/Pages/default.aspx

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
https://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-people-down-syndrome

Alzheimer's Biomarker Consortium-Down Syndrome aims to identify biomarkers that indicate AD is developing or progressing & track the AD process in people with Down syndrome.
https://www.nia.nih.gov/alzheimers/alzheimers-biomarkers-consortium-down-syndrome-abc-ds

Additionally, the NIA is currently funding a Phase I clinical trial to investigate the safety & tolerability of an immunotherapy vaccine for treatment of Alzheimer's in adults with Down syndrome
https://health.ucsd.edu/news/releases/Pages/2016-01-13-clinical-trial-alzheimers-characteristics-in-down-syndrome.aspx

Strategy 1.B: Expand Research Aimed at Preventing and Treating Alzheimer's Disease and Related Dementias

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

Ongoing & newly released NIH FOAs:

AMP-AD Activities are also relevant:
https://www.nia.nih.gov/alzheimers/amp-ad

1.B.2

Expand genetic epidemiologic research to identify risk & protective factors for AD/ADRD.

Conduct WGS 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

Ongoing & newly released FOAs:

Continue to support efforts through the ADSP, ADGC & NIAGADS.

Next generation sequence Data are available for 17,588 subjects (cases, controls & family members) including phenotype & individual-level information

ADSP
https://www.niagads.org/adsp/content/home

GCAD
http://www.adgenomics.org/

ADGC
https://www.niagads.org/resources/related-projects/alzheimers-disease-genetics-consortium-adgc-collection

NIAGADS
https://www.niagads.org/

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

In 2016, NIA launched an effort to identify & disseminate effective approaches & best recruitment & retention practices. With facilitation by the Alzheimer's Association & in close collaboration with experts from government, private, & academic sectors, these approaches will be outlined in the still-in-development National Strategy for Recruitment & Participation in AD Clinical Studies.

NIA continues to promote participation in AD/ADRD clinical trials, studies, & registries through our ADEAR website portal (http://www.nia.nih.gov/alzheimers/volunteer); clinical trials listing & monthly e-alert to more than 35,000 subscribers; social media messages through Facebook & Twitter; promotion of the ROAR toolkit of customizable materials for aging services & public health professionals to use in community settings & social media(https://www.nia.nih.gov/health/publication/roar-toolkit) inEnglish, Spanish, & Chinese, & collaboration with ACL, CDC, FDA & the PCORI-funded Alzheimer's & Dementia Patient/Caregiver-Powered Research Network to encourage research participation among older adults..

In June 2017, NIH hosted a workshop entitled Inclusion Across the Lifespan, to examine the science of inclusion of various populations in clinical trials & studies. https://www.nia.nih.gov/about/events/2017/inclusion-across-lifespan

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

Ongoing & newly released FOAs:

In 2016, NIA launched an effort to identify & disseminate effective approaches & best recruitment & retention practices, with a particular focus on reaching diverse communities. In facilitation with the Alzheimer's Association & in close collaboration with experts from government, private, & academic sectors, these approaches will be outlined in the still-in-development National Strategy for Recruitment & Participation in AD Clinical Studies.

In 2015, the 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.https://www.nia.nih.gov/health/publication/roar-toolkit

In June 2017, NIH hosted a workshop entitled Inclusion Across the Lifespan, to examine the science of inclusion of various populations in clinical trials & studies. https://www.nia.nih.gov/about/events/2017/inclusion-across-lifespan

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:

See also AMP. Part of this initiative seeks to identify biomarkers that can predict clinical outcomes by incorporating selected biomarkers into 2 NIH-funded clinical trials, which include industry support, designed to delay or prevent disease onset.

AMP-AD
https://www.nia.nih.gov/alzheimers/amp-ad

A list of ongoing AD/ADRD trials & information about enrolling is available as in the FY18 Bypass Budget. A newer update will be available in the upcoming bypass document set for release in the summer of 2017. https://www.nia.nih.gov/alzheimers/publication/stopping-alzheimers-disease-and-related-dementias/category-c-translational

Coordination of federal, non-federal, & international AD/ADRD research, including clinical trials, can be found in the IADRP. http://iadrp.nia.nih.gov/

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.

NIA has funded the EXERT trial to test whether moderate/high aerobic exercise & stretching can slow the progression of MCI to AD in adults over 65. This 18-month long trial is actively recruiting participants.
https://clinicaltrials.gov/ct2/show/NCT02814526

Ongoing & New FOAs include:

A list of ongoing AD/ADRD trials & information about enrolling is available as in the FY18 Bypass Budget. A newer update will be available in the upcoming bypass document set for release in the summer of 2017.
https://www.nia.nih.gov/alzheimers/publication/stopping-alzheimers-disease-and-related-dementias/category-c-translational

IADRP facilitates tracking research efforts, including treatment studies.
http://iadrp.nia.nih.gov/cadro-web/

Strategy 1.C: Accelerate Efforts to Identify Early and Presymptomatic Stages of Alzheimer's Disease and Related Dementias

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
http://adni.loni.usc.edu/

AMP-AD
https://www.nia.nih.gov/alzheimers/amp-ad

Ongoing FOAs include:

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

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
http://www.nih.gov/science/amp/index.htm

AMP-AD (Projects A & B)
http://www.nia.nih.gov/alzheimers/amp-ad

ADNI is also a public-private partnership between NIH, the Canadian government, & over 20 biopharmaceutical companies & non-profit organizations.

ADNI
http://adni.loni.usc.edu/about/funding/

Strategy 1.D: Coordinate Research with International Public and Private Entities

1.D.1

Inventory AD/ADRD research investments.

International AD Research Database launched July 2012 & continually updated.

NIH/NIA

 

Ongoing

IADRP now includes data from over 35 public & private funding organizations across 11 countries.
http://iadrp.nia.nih.gov/cadro-web/

The Common AD Research Ontology is also undergoing a significant update to the topics & themes that are used to categorize AD & ADRD funding data. The changes will reflect current research investment as well as highlight emerging areas of science.

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

AD Funders' meeting held during the 2016 AAIC; quarterly funders' calls led by NIA & Alzheimer's Association. Also, IADRP which includes data from over 35 public & private funding organizations across 11 countries is publicly-available for use.

In October 2016, representatives from NIH participated in the 24th Management Board Meeting of the EU JPND & delivered a presentation on the IADRP managed by the NIA. Over 30 member countries participated in the meeting; focused on the overall goal of increased international collaboration.

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; a patient checklist handout in English & Spanish, & other resources, which are available online in a mini-portal of resources for professionals.
https://www.nia.nih.gov/alzheimers/alzheimers-and-dementia-resources-professionals

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. See:

ADEAR Center
https://www.nia.nih.gov/alzheimers

Progress in Alzheimer's research is also reported in the annual Bypass Budget proposal.
https://www.nia.nih.gov/about/sustaining-momentum-nih-takes-aim-alzheimers-disease-related-dementias

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
http://www.fda.gov/Training/GuidanceWebinars/ucm345077.htm

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 of the 3rd Road Map began that will identify action items for public health professionals related to cognitive health through 2023. The 3rd Road Map will be released in late 2018.

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.
https://mindyourrisks.nih.gov/

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. https://www.nia.nih.gov/health/publication/brain-health-resource

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 GWEPs 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

HRSA, in collaboration with the HHS/OWH, supported the development of a second Medscape continuing education course on assessing, managing, & treating AD/ADRD in the context of multiple chronic conditions. This educational offering, titled "Bidirectional Impact of Alzheimer's Disease & Common Comorbid Conditions" was released in September 2016. A total of 7,107 learners accessed the site in the first 6 months.

In FY 2017, HRSA supported 44 GWEP awardees totaling approximately $38.7 million; $5.978 million was used to provide dementia education & training.

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; a patient checklist handout in English & Spanish, & other resources, which are available online in a mini-portal of resources for professionals.
https://www.nia.nih.gov/alzheimers/alzheimers-and-dementia-resources-professionals

NIA produced & disseminated Assessing Cognitive Impairment in Older Patients: A Quick Guide for Primary Care Physicians
http://www.nia.nih.gov/alzheimers/publication/assessing-cognitive-impairment-older-patients

2.A.2

Encourage providers to pursue careers in geriatric specialties.

Educate providers about opportunities through: the HRSA GWEP.

HRSA

 

Ongoing

In FY 2015, GWEP awardees provided 402 continuing education offerings & trained 43,148 participants on AD/ADRD.

2.A.3

Strengthen state aging, public health, & IDD workforces.

Educate the workforces through various means including online training, webinars, fact sheets & other tools.

ACL/AoA

HRSA

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 32 AAAs & 15 QIOs to strengthen state aging, public health, & IDD workforces.

HRSA GWEP awardees are collaborating with 32 AAAs & 15 QIOs to strengthen state aging, public health, & IDD workforces.

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

Ongoing

HRSA partnered with federal partners at ACL, CDC, CMS, HHS/OWH, & VA on a contract to develop a Dementia Curriculum for Health Care Professionals. The curriculum is designed to build a workforce with the skills to provide high-quality care, ensure timely & accurate detection & diagnosis, & identify high-quality dementia care guidelines & measures across care settings. The curriculum was available as of July 2017.
https://bhw.hrsa.gov/grants/geriatrics/alzheimers-curriculum

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, Alzheimers.gov & other federal partners to ensure aging & public health workforces receive recent, updated & culturally-competent information.

ACL/AoA, NIH/NIA

CDC, AHRQ

Ongoing

NIH initiated a project involving AHRQ & NASEM, to conduct a systematic review of the evidence on prevention of clinical AD-type dementia, MCI, & age-related cognitive decline (AHRQ), & to shape these findings into a set of recommendations for public health practice & research (NASEM).

The NASEM report, detailing recommendations for public health messaging based on findings were released in June 2017.

For more information see:

AHRQ report
https://www.effectivehealthcare.ahrq.gov/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productID=2417

NASEM report
https://www.nationalacademies.org/dementia

Free continuing education is available to professionals who need it when they view recorded webinars. This continuing education is available through 2016.
http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/index.aspx#resourcs

The interagency ROAR (NIH, ACL, CDC) group hosted an update in the popular webinar series in 2017 for professionals on AD/ADRD resources that drew 500+ participants & offered continuing education credit. Free continuing education is available to professionals who need it when they view recorded webinars from 2017 & earlier series. This continuing education is available through 2018.

https://www.nia.nih.gov/alzheimers/announcements/2017/02/2017-alzheimers-and-dementia-webinars-professionals

https://www.nia.nih.gov/alzheimers/alzheimers-and-dementia-resources-professionals

2.A.6

Engage the public health workforce on brain health.

Conduct briefings with federal, state, & local public & private partners regarding the HBI: 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.

CDC in collaboration with the Alzheimer's Association developed A Public Health Approach to Alzheimer's & Other Dementias. This introductory curriculum describes the role of public health in addressing the epidemic of AD/ADRD. Its 4 modules each contain a comprehensive faculty guide & slide deck. Whether you're teaching a public health course at an academic institution or delivering health education at the local level, explore how you can adapt this flexible resource to fit your needs.
http://www.alz.org/publichealth/curriculum.asp

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 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. Exploring use of Project ECHO to support diagnosis & management of ADRD.

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

Survey pilot-tested at 1 Tribal site.

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 when the curriculum is available.

2.A.10

Decision Support for Clinicians.

Develop & pilot-test decision support tools for clinicians using the IHS EHR.

IHS

 

Ongoing

In development.

2.A.11

Interdisciplinary Team Training in recognition, assessment, & management of dementia in small rural Indian Health facilities.

Provide the VA RITT to 10 IHS & Tribal sites with a focus on dementia care.

IHS

VA

Ongoing

Eight trainings completed. Two more scheduled as well as training in Alaska in partnership with the Aleutian-Pribilof Islands Association.

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 AD & Their Caregivers.

2.A.13

Fill service gaps in dementia-capable systems by expanding the availability of specialized services & supports to target previously under-served 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

As 1 example, CMS is supporting state Medicaid agencies in community integration through HCBS. One targeted area of support is helping a select number of Medicaid agencies plan & implement quality & outcome incentives in their HCBS programs.

https://www.medicaid.gov/state-resource-center/innovation-accelerator-program/community-integration-ltss/ci-ltss.html

2.A.16

Disseminate CMS Hand-in-Hand dementia training materials in VA CLCs.

Share with federal partners a summary report on implementation & evaluation of VA's dissemination of CMS Hand-in-Hand dementia training materials in VA CLCs.

VA

ASPE,ACL, HRSA

Ongoing

This is an ongoing project. Evaluation activities were underway in 2017.

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.

NIH/NIA

CDC

Ongoing

Searchable database of assessment tools
http://www.nia.nih.gov/research/cognitive-instrument

Updated fact sheet on the AWV for FFS Medicare providers
http://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/Downloads/AWV_Chart_ICN905706.pdf

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."
https://www.nia.nih.gov/alzheimers/alzheimers-and-dementia-resources-professionals

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

Two webinars & an issue paper were made available in 2015

Resources: Webinar: IDD & Dementia--California Webinar http://www.aoa.acl.gov/Site_Utilities/Standard_External_Disclaimer.aspx?redirection=https://youtu.be/ZCZb7aMrSMU

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

The focus of the REACH intervention in its final year will be on increasing awareness of ADRD in those communities served by REACH & increasing use of REACH caregiver support services.

Strategy 2.C: Educate and Support People with Alzheimer's Disease and Related Dementias 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. CMS is doing other work through its Innovation Center to facilitate this goal.

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.

2.D.3

Clarify & disseminate information on privacy, autonomy, & safety issues for physicians.

Develop information for physicians on privacy, autonomy, & safety issues. This resource will help providers better understand these issues & the balance between safety, privacy, & autonomy.

HRSA

 

Ongoing

HHS will disseminate this information through the trainings provided by GWEP awardees.

2.D.4

Training Resources for IHS Staff.

Review of training resources for IHS nursing staff highlighting person-centered goals & strategies for improving care for persons with dementia.

IHS

HRSA

Ongoing

IHS collaborated with HRSA to engage the HRSA-funded GWEPs in strategies to improve recognition & diagnosis of dementia.

Currently 8 GWEPs partner with federally recognized Tribal populations & 1 collaborates with a non-federally recognized Tribal population. The 9 GWEPs have developed a Native Populations Interest Group in preparation for exchanging training materials. The University of Wyoming is currently developing culturally-relevant dementia training material for Native American people on the Wind River Reservation by creating a pictorial version of the Alzheimer's Association's "Know the 10 Signs: Early Detection Matters".

2.D.5

Understanding trends in residential care settings for older adults.

Analyze trends in residential care, using data at various points in time from several data sources, including MCBS, NHATS, & NSLTCP.

ASPE

 

Ongoing

 

2.D.6

Study factors influencing the progression of disability in older adults.

Use the NHATS 2011-2015 data to study the progression of disability & the implications for caregiving needs.

ASPE

 

Ongoing

 
Strategy 2.E: Explore the Effectiveness of New Models of Care for People with Alzheimer's Disease and Related Dementias

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 for the HCIA Round 1 awards were released in March 2017 (see Plan updates). HCIA Round 2 First Annual Evaluation Report was released in August 2016.

Third Annual Evaluation Report Released in March 2017.

HCIA-2 First Evaluation Report was released in August 2016
https://downloads.cms.gov/files/cmmi/hcia2-yroneevalrpt.pdf

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

Year 2 Results
https://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2016-Fact-sheets-items/2016-08-09.html

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

http://www.supporteddecisionmaking.org

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

 

Complete, report expected July 2017

 

2.E.6

Analyze reimbursements for high-quality, community-based, ambulatory mental health & substance use disorder services.

Two year demonstration program of Certified Community Behavioral Health Clinics.

ASPE

SAMHSA

Ongoing

http://www.samhsa.gov/section-223

2.E.7

Studying home health utilization.

Study to better understand the growth in use of the Medicare home health benefit by community-admitted users--those individuals for whom home health episodes are not preceded by a hospitalization of PAC stay.

ASPE

 

Ongoing

 
Strategy 2.F: Ensure that People with Alzheimer's Disease and Related Dementias 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 and Related Dementias

2.G.1

Implement & evaluate care coordination models.

Implement & evaluate care coordination models.

CMS

 

Ongoing

Multiple care coordination models & guidance on care coordination continue across CMS.

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 Related Dementias 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.

http://www.alzheimers.gov

Fact sheets
http://www.eldercare.gov/eldercare.NET/Public/REsources/Advanced_Care/Index.aspx

NIA's ADEAR continues to offer free information on AD/ADRD caregiving
https://www.nia.nih.gov/alzheimers/topics/caregiving

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 #1P50 HS 019917 awarded & 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 #5R18HS027836 awarded 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.A.3

Increase awareness of the importance of brain health in culturally sensitive ways.

Increase awareness of brain health, specifically AD/ADRD & caregiving among African Americans.

CDC

 

Ongoing

CDC supported the development of NBHCAA. The mission of Brain Health Center is to raise awareness of the issues of cognitive health among African Americans by working through networks of faith-based institutions & by establishing partnerships with organizations & individuals dedicated to our mission. The 3 areas of focus of brain health education, mobilization & advocacy, & networking. The Brain Health Center serves as an information hub on the human brain that must be shared throughout all networks that reach & touch approximately 40 million African Americans living in the United States. http://brainhealthcenterforafricanamericans.org/

Memory Sunday: Increasing Awareness of AD in Church Congregations. CDC supported the Balm in Gilead to develop & implement Memory Sunday, the Second Sunday in June, as a designated Sunday, within congregations serving African Americans, that provides education on Alzheimer's: prevention, treatment, research studies & caregiving. The purpose of Memory Sunday is to bring national & local attention to the tremendous burden that Alzheimer's & other Dementias are having on the African American community; to utilize the power & influence of the African American pulpit to bring awareness; to distribute the facts about Alzheimer's; to encourage participation in research studies & to support persons living with Alzheimer's & their caregivers.

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

Resources for dissemination
http://www.alzheimers.gov

NIA's ADEAR continues to offer free information on AD/ADRD research & interventions
https://www.nia.nih.gov/alzheimers

Ongoing & newly released FOAs:

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. November 2016 Tribal LTSS conference in Minneapolis, MN. Ongoing webinar series through the CMS/IHS/ACL LTSS technical assistance website. A CMS-funded baseline survey of Tribal LTSS is in development.

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 #5R18HS027836 awarded 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). 47 communities reached as of April 2017.

Implementation began in February 2015, with 47 Communities as of December 2016.

Implementation in 50 Tribal communities by February 2018. Focus in final year is on sustainability.

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 and Related Dementias

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.

https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertificationGenInfo/National-Partnership-to-Improve-Dementia-Care-in-Nursing-Homes.html

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

In 2016, NIH published an Age Page on Elder Abuse to educate the public & disseminate information about types of elder abuse, dealing with caregiver stress, & how to help. https://www.nia.nih.gov/health/publication/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. https://www.justice.gov/opa/pr/department-justice-launches-10-regional-elder-justice-task-forces

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
https://www.justice.gov/elderjustice/financial/faq.html

Strategy 3.E: Assess and Address the Housing Needs of People with Alzheimer's Disease and Related Dementias

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

Picture of Housing & Health: Medicare & Medicaid use of Older Adults in HUD-Assisted Housing
https://aspe.hhs.gov/basic-report/picture-housing-and-health-medicare-and-medicaid-use-among-older-adults-hud-assisted-housing

Picture of Housing & Health Part 2: Medicare and Medicaid Use Among Older Adults in HUD-Assisted Housing, Controlling for Confounding Factors
https://aspe.hhs.gov/basic-report/picture-housing-and-health-part-2-medicare-and-medicaid-use-among-older-adults-hud-assisted-housing-controlling-confounding-factors

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

https://aspe.hhs.gov/basic-report/support-and-services-home-sash-evaluation-second-annual-report

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

https://aspe.hhs.gov/basic-report/understanding-unlicensed-care-homes-final-report

Goal 4: Enhance Public Awareness and Engagement
Strategy 4.A: Educate the Public about Alzheimer's Disease and Related Dementias

4.A.1

Design & conduct a national education & outreach initiative.

Plan, fund, & implement AD/ADRD awareness activities, in racially & 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, & 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 the 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.

Beginning in 2017, NIA will manage Alzheimers.gov to continue to expand public outreach about AD/ADRD.

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
https://www.whitehouse.gov/the-press-office/2016/03/29/presidential-memorandum-mental-health-and-substance-use-disorder-parity

4.A.4

Dementia Chart Book.

Complete a chart book with important information on the population of community-dwelling people with dementia in the United States & their caregivers

ASPE

 

Release in Fall 2017

 
Strategy 4.B: Work with State, Tribal, and Local Governments to Improve Coordination and Identify Model Initiatives to Advance Alzheimer's Disease and Related Dementias 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

This work will continue throughout the duration of the NAPA legislation & beyond.

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
http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx

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

4.B.3

Get Tribal input on AD/ADRD, & support improved coordination between IHS, Tribal, & Urban Indian Health programs & the Tribal Aging Network around 4 person-centered goals.

Convene Tribal leaders.

Improve coordination between IHS, Tribal, & Urban Indian Health programs & the Tribal Aging Network around 4 person-centered goals.

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

ASPE, ACL/AoA, VA

Ongoing

Alzheimer's Association meetings with the United South & Eastern Tribes & with the Northwest Portland Area Indian Health Board. Tribal representation on the Alzheimer's Association/CDC Health Brain Initiatives Road Map.

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

This work will continue throughout the duration of the NAPA legislation & beyond

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

This work will continue throughout the duration of the NAPA legislation & beyond

5.A.3

Summarize data on cognitive impairment & caregiving across states.

Report on BRFSS data on cognitive decline & caregiving.

CDC

 

Ongoing

BRFSS Data & Data for Action. CDC worked with partners & revised the BRFSS Cognitive Decline & Caregiving Optional Modules, which were approved as official optional modules beginning in 2015. In 2015 & 2016, 51 states collected data using the Cognitive Decline Module & 40 states collected data using the Caregiving Module. Additional states are collecting data using the Cognitive Caregiving Modules in 2017. Findings from the 2015 cognitive & caregiving data are publically available on CDC's Healthy Aging Data Portal & fact sheets & infographics were developed for each participating states. Findings from 2016 BRFSS will be released late in 2017.

http://www.cdc.gov/aging/agingdata/index.html

http://www.alz.org/publichealth/data-collection.asp

https://www.cdc.gov/aging/healthybrain/surveillance.htm

CDC supported the development & collection of subjective cognitive decline & cognitive functioning data from the in-person NHANES are publically available for download & analysis. These data were collected in adults 60 years & older as part of the 2011-2012 & 2013-2014 data collection cycles. The data included in this release include results from 3 tests of cognitive function: CERAD. http://www.cdc.gov/nhanes

5.A.4

Develop & disseminate measures of awareness of AD/ADRD.

Release report on validated survey questions.

CDC

 

Ongoing

CDC is examining the validity of subjective cognitive questions used in national surveys by comparing self-rated perceptions of cognitive functioning to functional measures. The report will be released in 2018.

5.A.5

Summarize existing data on people with AD/ADRD & their caregivers.

Develop & release data portal.

ASPE

CDC/NCHS, NIH/NIA, ACL/AoA

Ongoing

CDC's Healthy Aging Data Portal. The portal was updated with CDC Updates Public Data Portal on the Health of Older Adults. CDC recently updated the Healthy Aging Data Portal, which provides access to a range of national, regional, & state data on older adults. This resource was developed by the National Center for Chronic Disease Prevention & Health Promotion. It allows users to examine data on key indicators of health & well-being for older Americans, such as tobacco & alcohol use, screenings & vaccinations, & mental & cognitive health.

2015 BRFSS data, including data on cognitive decline from 35 states & data on caregivers from 24 states. Portal users can retrieve CDC data by indicator or by geographic area, & then use these data to develop reports & create customized maps, charts, & graphics. Public health professionals can use the data to create a snapshot of the health of older adults in their states, which can help them prioritize & evaluate public health interventions. https://www.cdc.gov/aging/agingdata/index.html

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

This work will continue throughout the duration of the NAPA legislation & beyond.

5.B.2

Update the National Plan annually.

Release updated National Plan.

ASPE

 

Ongoing

This work will continue throughout the duration of the NAPA legislation & beyond.