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Advisory Council October 2019 Meeting Summary

October 21, 2019

Washington, D.C.

Printer Friendly Version in PDF Format (11 PDF pages)



  • Non-Federal Members Present: Katie Brandt, CynthiaCarlsson, Debra Cherry, Robert Egge, Bradley Hyman, Matthew Janicki, Becky Kurtz, Allan Levey, Maria Ordonez, Gloria Owens

  • Federal Members Present: Ellen Blackwell (CMS); Richard Hodes, M.D. (NIA); Erin Long (ACL); Lisa McGuire, Ph.D. (CDC); Deborah Olster, Ph.D. (NSF); AnthonyPacifico, Ph.D. (DoD); Marianne Shaughnessy (VA)

  • Advisory Council Designated Federal Officer: Helen Lamont (ASPE)

  • Other Federal Officials Present: Judy Dey (ASPE), Elena Fazio (NIA)



The meeting was called to order at 9:31 a.m. by Co-Chair Katie Brandt.

Introductions. Council members introduced themselves. Co-Chair Allan Levey provided an overview of the agenda. The focus of this meeting is Long-Term Services and Supports (LTSS).

Overview of 2019 Update to the National Plan to Address Alzheimer's Disease. Helen Lamont provided an overview of the 2019 Update to the National Plan to Address Alzheimer's Disease, including the Plan's goals, framework, and implementation. She explained that this mandated annual Update reports on progress and updated activities between July 2018 and July 2019, addresses recommendations of the Advisory Council adopted in July 2019, and identifies next steps to actions in the National Plan and new areas of work by U.S. Department of Health and Human Services agencies and federal partners. She detailed some of these new activities undertaken by different federal agencies within each of the Plan's five goals.

LTSS Presentations. LTSS Subcommittee Chair Debra Cherry explained that the focus of the Subcommittee's work has been the expansion of services needed by people living with Alzheimer's Disease and Related Disorders (AD/ADRD) and their caregivers. The morning's presentations address home and community-based services (HCBS) that increase options for families.

  • Review of 2019 LTSS Recommendations and Overview of Agenda. Dr. Cherry presented the LTSS Subcommittee's 2019 recommendations: (1) Expand supports for people living with AD/ADRD and their caregivers; (2) Improve integration of clinical care with HCBS; and (3) Individuals with AD/ADRD will not be prescribed antipsychotics unless clinically indicated.

  • Setting the Stage: Words from a Family Caregiver. Steven Browne shared his experiences caring for Richard, his partner of 35 years, who received a diagnosis of temporal dementia in 2008 and passed away in 2014. A financial challenge was paying for expensive legal advice to protect their assets and to enroll in Massachusetts's Program of All-Inclusive Care for the Elderly (PACE). He placed Richard in daycare in order to continue working but had to arrange daily van transport and 3 hours of daily in-home care at a rate of $25/hour. Mr. Browne cut back his work hours to care for his partner and retired fully at age 66 to devote himself full time to Richard's care. His most difficult decision was to place Richard in a nursing home. Just before Thanksgiving 2014, Mr. Browne signed papers to place Richard in hospice care. Unfortunately, the hospice nurse was not available for 5 days over the holiday. During that time, needed services that could only be provided by that nurse were not available and Richard declined significantly, dying shortly thereafter. In reflecting on his experiences, Mr. Browne encouraged other caregivers to enroll in the PACE program. He also recommended that they attend support groups and to care for themselves in order to serve their loved ones.

  • Panel: Current Landscape of LTSS for People with Dementia. Panel moderator Robert Eggeprovided an overview of how the overall LTSS system works, including HCBS and institutional care. Medicare does not cover LTSS so oftentimes families must pay for out of their own resources. For some people who have limited resources and income, or others who "spends down" resources to pay for care, they may meet means test for come Medicaid eligible. Medicaid includes institutional long-term care as a mandatory benefit but all states use Medicaid waivers to support community alternatives for long-term care in the community. States may use funding from other federal agencies such as the Administration for Community Living (ACL) or state funds to provide more flexible care options, but these programs are limited due to budgetary constraints. Thus, HCBS is critically important because people living with dementia prefer to stay in their own homes; it's also more cost-effective for government and families.

    • Risks and Costs of Dementia at Older Ages. JudyDey introduced Melissa Favreaultof the Urban Institute who reported on an ASPE-supported study of the risks and costs of dementia at older ages. It began with a literature review to provide insights to build a tool that the Office of the Assistant Secretary for Planning and Evaluation (ASPE) can use to explore policies to support people living with dementia and their caregivers. The study employed a dynamic simulation of income model based on aging algorithms from high-quality data sources. Its key conclusions:

      • The number of older adults in the United States with dementia is expected to nearly double by 2055.

      • The burden of disease affects different populations disproportionately.

      • Among those who develop dementia, roughly half will have it for 4 or more years.

      • The average present value of care for people with dementia is over $170,000.

      • Families and Medicaid cover most care costs.

      • Families face the double burden of paying for formal care and providing informal care, where the value of informal care exceeds the formal costs.

      • Nursing home care is the most costly, but the value of informal care is even more significant.

    • Federal and State Collaboration to Deliver HCBS for People Living with Dementia and their Family Caregivers. Carter Harrison, Alzheimer's Association, reported on how Virginia created a system responsive to the second recommendation of the LTSS Subcommittee (i.e., to improve the integration of clinical care with HCBS). Virginia had received ACL grants for caregiver support with good outcomes for avoiding institutionalization and informing caregivers of the realities of dementia. It wanted to apply lessons learned from its own and other states' ACL experiences to Medicaid. The goal was to create a statewide network of interdisciplinary memory assessment clinics with specialized dementia-capable services for individuals with dementia and their caregivers from assessment and diagnosis through end-of-life. "Partners in Virginia" is deployed through the University of Virginia and Riverside Health Systems. The program uses an interdisciplinary clinical team at memory assessment clinics placed within the health systems for evaluation, diagnosis, and the development of a care plan. A Dementia Care Manager is located within the clinic, providing in-person and telephone assistance to patients, families, and caregivers to connect them with information, education, and resources for an extended period. This has been key to the program's success. With a focus on the identification of those with dementia, Partners in Virginia sought to identify quality of care measures to apply to the initiative, but were chagrined to learn that these did not exist. Therefore, Partners in Virginia borrowed Medicare-related measures from the Physician Quality Reporting System focused on staging of dementia, cognitive assessment, and functional status. Adoption of these measures led to the development of the dementia-specific health management programs. Outcomes of the Partners in Virginia initiative include delayed institutionalization, fewer hospitalizations, improved caregiver satisfaction, decreased depression, and more family supports. Among the lessons learned: it is important to make sure that Medicaid services are dementia specific. For example, people with AD/DRD do not remember to push the button on a personal emergency response device when they fall. Therefore, Virginia provides gyroscope-based devices that automatically trigger an alarm. The program planners also learned that caregivers do not understand companion services and thus use personal care services for a longer time than needed. Currently, Virginia is seeking to engage more local health departments to increase education about dementia risk factors to increase the number of diagnoses.

    • Discussion. Council discussion focused on varying definitions of the duration of dementia and the subsequent costs associated with them. The Urban Institute study compared three birth cohorts from the 1950s through the 1970s; the costs of care are higher for the more recent cohorts due to increases in education and wages. States have the option to provide for self-directed services for beneficiaries, which can reduce costs. Models that provide wraparound services and guidance for using them provide a valuable support to people living with dementia and their caregivers.

    • Best Practice Caregiving: Guiding Organizations' Dementia Programs for Family Caregivers. David M. Bass, Benjamin Rose Institute on Aging, described Best Practice Caregiving, a project of the Rose Institute, Family Caregiver Alliance, and the GerontologicalSociety of America. Best Practice Caregiving is an online tool on the Family Caregiver Alliance website that is now being beta-tested with a public launch anticipated in November 2019. Its goal is to increase knowledge and adoption of non-pharmacological, evidence-based programs for family and friend caregivers by health care and community service organizations. Designed to address the issue that many professionals do not know about the availability of proven programs that are ready for broad scale community implementation, and the barriers to obtaining implementation information about them, the tool details 42 proven dementia caregiving programs, including a comprehensive profile, implementation features, experiences of current delivery sites, research evidence base, bibliography, and contact information. Dr. Bass demonstrated how to search the tool to identify and learn more about relevant programs.

  • Panel: Expanding Access to LTSS: Promising State Models (moderated by Becky Kurtz)

    • Expanding Access to LTSS through Caregiver Support. Susan Engels, Washington State Department of Social and Health Services, described two initiatives that Washington State has implemented to expand access to LTSS. The Family Caregiver Support Program (FCSP) connects caregivers with local services. In 2010, FCSP began using an evidence-based screening tool, the Tailored Caregiver Assessment and Referral System (TCARE®), to assess the caregiving situations of family caregivers and to help determine what levels and types of services are needed. An earlier evaluation of TCARE had demonstrated significantly reduced stress, depression, and relationship burden among caregivers using it compared to "usual care." Based on these findings, the program was expanded in 2012 and 2013 by the state Legislature. A study comparing outcomes of the program pre-expansion and post-expansion demonstrated that 12 months after the TCARE screen, there was a reduction in the use of Medicaid long-term care services and in community residential services. Washington State then applied for an 1115 waiver to expand its support for caregivers and care receivers. In 2017, it began implementing Medicaid Alternative Care to support unpaid caregivers in continuing to provide quality care and Tailored Supports for Older Adults to support individuals who need LTSS and are at risk of spending down assets to impoverishment with or without unpaid caregivers. The second initiative is the Long-Term Care Trust Act, designed to provide funding to older adults for LTSS that they will need. Beginning in 2022, all Washington State workers will contribute to the trust fund, which invests the monies. Each person who is eligible to receive the benefit can access services and supports, such as professional care at home or in a facility, adaptive equipment, caregiver training and pay, home-delivered meals, and rides to the doctor, costing up to $36,500. The goal is to delay and defer enrollment in Medicaid long-term care and the use of other costly LTSS.

    • Healthy Connections Prime: Caregiver Supports. Dustin Welch, State of South Carolina, described his state's Healthy Connections Prime program that serves those dually eligible for Medicare and Medicaid. Launched in February 2015, the program serves 14,829 Medicare-Medicaid enrollees 65 years and older in 40 counties (out of 47) through three (of five) Medicare-Medicaid Plans in the state. Healthy Connections Prime is an integrated care program that provides person-centered care by a multidisciplinary team, provider and care coordinator access to an individualized care plan, value-based purchasing, and a single set of benefits with a single payment stream, among other characteristics. It is one of the 13 original Financial Alignment Demonstration programs allowed by the Centers for Medicare & Medicaid Services (CMS) under a Section 1115A waiver. The program is currently operating under a 2-year extension and has requested an additional 3-year extension. The person-centered program design emphasizes person-centeredness, including a comprehensive assessment of psychosocial, functional, and behavioral health conducted face to face, most often at home. A multidisciplinary team addresses the social determinants of health (e.g., housing, food insecurity). A Care Coordinator oversees a wide range of services for the member and his/her family, as needed, including respite for caregivers. The person-centered design includes four program domains: assessment and care planning, benefit design, training, and quality improvement. Healthy Connections Prime is recognized by AARP for its caregiver assessment, care coordinator training, and quality measurements related to caregiver supports.

    • Discussion. The presenters offered recommendations to the LTSS Subcommittee and federal partners. Ms. Engels commented that, in relation to the 1115 waiver and the Older Americans Act in general, there is an institutional bias in Medicaid LTSS in which states must get federal authority to offer alternatives under Medicaid to pay for services outside of the nursing home. The state encourages the Federal Government to allow states flexibility in how they utilize Medicaid services to support unpaid family caregivers as an alternative choice for individuals who may not need or want to access personal care services, and in the design of services that will result in delays or diversions from traditional Medicaid-funded LTSS. It is also important that appropriations for the Older Americans Act keep pace with the growth of older adults in the nation, and that specific counseling options for allowing individuals to plan for the use of their own resources be included. Without a federal Long-Term Trust Act, Medicaid will continue to be the safety net and insurer for LTSS, requiring individuals to impoverish themselves to qualify. States will continue to innovate to meet the needs of their populations, but their solutions are not portable as people move from one state to another. Washington State further recommends that the Federal Government work with Congress to create viable solutions to the issues, including creation of incentives for states to share in savings achieved in Medicare and Medicaid dollars, such as through Washington State's Long-Term Care Trust Act. Mr. Welch recommended that, because of the uniqueness of each state's Medicaid program, states should be encouraged to share their programs and lessons learned so that other states can learn from these experiences.

      Council members also posed questions to Dr. Bass regarding the Best Practices Caregiving online tool, including how it addresses caregiver burden to participate in programs and how it assesses program fidelity at multiple sites. He explained how local delivery site information is provided.

      Federal partners reported on work they are doing related to evidence-based LTSS interventions. ACL has completed a compendium of 18 interventions it has funded. It is also providing web-based trainings on AD/ADRD services; the American Council on Aging is evaluating its training programs, including dementia-specific interventions. The Health Resources and Services Administration (HRSA) provides workforce development across the educational continuum, including practitioners at all levels, families, and caregivers. Examples of topics include advanced care planning, dementia, medications relating to opioids, palliative care, and fall prevention. HRSA has developed a 16-module dementia curriculum in collaboration with the Centers for Disease Control and Prevention (CDC) for health care professionals, as well as a caregiver curriculum to educate providers on how to include caregivers on the health care team and educate caregivers on how to participate and how to take care of themselves.

  • Summary and Discussion: How to Realize NAPA's LTSS Recommendations. Dr. Cherry reminded Council members that in 2015 the Alzheimer's Association convened an expert consensus workgroup to build milestones for Goals 2 and 3 in the National Plan. Some of these have been realized already, but others could provide the basis for an "LTSS Moonshot" for 2025 (e.g., 80% of people getting the services they need, 90% of family caregivers or people living with AD/ADRD having access to a community-based education support program, doubling funding for key caregiver support programs by 2020, Medicare covering key family and friend caregiver support and skill-building programs). She encouraged the Council to develop 2025 moonshot goals for NAPA.

The Council broke for lunch at 12:25 p.m. and was reconvened at 1:40 p.m. by Dr. Levey.

Public Comments

  • Susan De Santi, Vice President of Medical Affairs in North America and Asia Pacific, Life Molecular Imaging, addressed innovations in the diagnosis of AD/ADRD. Life Molecular Imaging provides positron emission tomography (PET) scans of beta amyloid plaques that were used in the CMS-approved Imaging Dementia--Evidence for Amyloid Scanning (IDEAS) clinical trial of 18,000+ Medicare beneficiaries that showed that beta amyloid imaging improved medical management of patients with cognitive impairment or dementia, and their diagnoses. There is now discussion of a second phase of the IDEA study with 7,000 patients and greater representation from African-American and Hispanic populations. In the first study, many academic institutions and large hospitals participated. In order for them to do so again, Life Molecular Imaging asks for Council support for an extension of pass-through for Food and Drug Administration-approved amyloid imaging radio pharmaceuticals to ensure full participation in the trial and an expedited timeframe to complete the study.

  • Mary Hogan spoke on behalf of those with intellectual disabilities and their caregivers; her brother Bill had Down syndrome and died of AD/ADRD. She shared copies of "Alzheimer's Disease and Down Syndrome: A Practical Guide for Caregivers," developed by the National Down Syndrome Society and encouraged federal partners to post it on their agencies' websites.

  • Angela Taylor, Lewy Body Dementia Association, shared research findings from a study by Katherine Possin, University of California San Francisco. The study assessed direct health care costs by people diagnosed with dementia using 3 million California Medicare fee-for-service claims and compared costs by specific dementia subtype. Lewy body dementia (LBD) was the costliest subtype. Ms. Taylor pointed out that LBD is frequently missed as a diagnosis or is misdiagnosed as AD/ADRD. She encouraged further study of the diagnostic process and the costs to the family of an incorrect diagnosis.

Update on the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. The 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers will be held on March 24-25, 2020, at the Natcher Conference Center in Bethesda, MD. Elena Fazio, National Institute on Aging (NIA), explained that summits allow input that turns into research recommendations based in the context of current science. At the National Institutes of Health (NIH), the recommendations inform the development of research implementation milestones, with related success criteria and timelines. There are now three types of summits in triennial rotation: AD summits (started in 2012); ADRD summits (2013); and Dementia Care, Caregiving, and Services (2017). Katie Maslow, Gerontological Society of America, provided an overview of the development of the 2017 Summit. After the 2015 AD Summit, some envisioned a care and services summit to help address research for goals 2-4 of the National Plan. It was first presented as an idea in the public comments session at a NAPA Advisory Council meeting. In late 2015, AARP convened a 1-day meeting to identify research topics that could be addressed. In April 2016, the NAPA Advisory Council Chair appointed two summit co-chairs and a steering committee. The goal of the 2017 Summit was to identify what was known and needed to be known in order to accelerate the development, evaluation, translation, implementation, and scale-up of comprehensive care, services, and supports for person with dementia, families, and other caregivers. Eight pre-summits were held to leverage existing research activities and input was obtained from six stakeholder groups: persons living with dementia, family caregivers, service providers, states, the workforce, and payers. Twelve themes and 58 recommendations emerged and were published in a final report, available on the ASPE Care Summit website. David Reuben, University of California Los Angeles, discussed planning for the 2020 Summit; its goal is to highlight progress that has been made since, and as a result of, the 2017 Summit. Six themes are driving Summit planning. The first three focus on people living with AD/ADRD and what happens to them: (1) Impact of Dementia; (2) LTSS in Home, Community, and Residential Care Settings for Persons with Dementia and Their Caregivers; and (3) Services and Supports in Medical Care Settings for Persons with Dementia. There is also an Integration theme that falls between Theme 2 and 3: The Present and Future of Integrated Long-Term and Medical Care. The remaining three themes focus on research: (4) Participation of Persons with Dementia and Their Caregivers in Research; (5) Intervention Research, Dissemination, and Implementation; and (6) Research Resources, Methods, and Data Infrastructure. Fifty to 60 research recommendations are being developed in advance and will be vetted at the Summit. Following the Summit, the Planning Committee will prioritize recommendations and identify the most important ones.

Discussion. Discussion focused on the importance of research and identification of research gaps in scientific progress, as well as appreciation for the amount of planning that goes into a summit.

Federal Agency Updates and Highlights. Eleanor McConnell, Ph.D., RN, presented key findings from the Veteran Health Administration's (VHA's) dissemination and process evaluation of CMS's "Hand in Hand" Training Program for skilled nursing homes with VHA's Community Living Centers in 2015-2017. The six-module training program focuses on key behavioral symptoms and desired staff responses. VHA convened a workgroup to guide the implementation of the training. Their efforts reached 14,000 staff members; over 90% said they had learned new techniques for care that they could use in their daily work. The keys to success of this initiative included leadership support at multiple levels, diverse stakeholder perspectives from the implementation workgroup, technical assistance from a peer-educator, and the use of existing systems to track attendance and collect staff responses.

Richard Hodes, NIA, reported that the Senate committee draft of the fiscal year (FY) 2020 budget for NIA includes a 16.9% increase over the FY19 level, including $350 million for AD/ADRD research; the House of Representatives passed a bill that includes an 8.8% budget increase for NIA, with no mention of additional AD/ADRD research funding. He highlighted a new initiative--the NIA Impact Collaboratory--awarded in September, to strengthen the national capacity to implement large-scale, cost-effective research studies that engage health care delivery organizations as research partners for people living with dementia and their caregivers. It will develop and disseminate technical, policy, and best practices; enhance research development and investigator capacity via piloting of embedded pragmatic clinical trials; and engage stakeholders. He also announced NIH's second Inclusion Across the Lifespan Workshop on September 2-3, 2020.

Mary Butler, Ph.D., Minnesota Evidence-based Practice Center, described efforts funded by the Agency for Healthcare Research and Quality to evaluate the state of knowledge on the impact of interventions to slow cognitive decline or prevent dementia via a systematic review of the literature focused on care for people with dementia and their informal caregivers, as well as programs for formal caregivers. Strength of evidence assessments such as this address the risk of bias and enhance confidence that study findings can be replicated. Council members asked for clarification of pragmatic clinical trials (studies closest to real-life situations, but equally rigorous when compared to a randomized clinical trial) and the scope of settings included in the review (all potential settings). The first draft of the assessment is expected in time for the March 2020 National Summit.

Ellen Blackwell, CMS, provided information about: (1) A training on person-centered care for those in nursing homes that was presented on Medicare Learning Network Connects in September 2019; CMS is working with the National Quality Forum and ACL to define person-centered planning and facilitation. (2) There is a proposed rulemaking on the Physician Fee Schedule; the public comment period closed on September 27, 2019. (3) Final rule revisions to discharge planning requirements were published in September 2019, as was the burden reduction rule that streamlines some procedures that impact people with dementia. (4) Improvements have been made to CMS's Nursing Home Compare site to more easily identify nursing homes with past citations for abuse, neglect, or exploitation.

Erin Long, ACL, reminded the Council that ACL has state and community programs in 33 states and Puerto Rico. She reported on four ACL initiatives: (1) In September 2019, ACL awarded $10,370,642 to 13 new grantees under the Alzheimer's Disease Programs Initiative to improve dementia capability. (2) The RAISE Family Caregiving Advisory Council held its first meeting in August 2019. Its work will be supported by the RAISE ACT Family Caregiver Resource and Dissemination Center funded by a grant from the John A. Hartford Foundation to the National Academy for State Health Policy. (3) The National Alzheimer's and Dementia Resource Center has announced its 2019-2020 webinar series; each webinar is attended by 400-800 people. In September, the Center released three new publications; a fourth--ACL Grantee Developed Resource Highlights and Compendium--will be released in the near future. (4) Enhancing Neurocognitive Health, Abilities, Networks, and Community Engagement--a new Rehabilitation Engineering Research Center--has been funded to identify, develop, and evaluate technology solutions to support the ability of aging adults with cognitive impairment to perform home-living and community activities.

Lisa McGuire reported on new developments at CDC: (1) A new National Health Statistics Report on "Cognitive Performance in Adults Aged 60 and Over: National Health and Nutrition Examination Survey, 2011-2014" is a collaborative effort between CDC's Alzheimer's Disease and Healthy Aging Program and the National Center for Health Statistics. The study included in-person cognitive performance testing and in-home interviews to address subjective decline and cognitive performance. Older adults with Subjective Cognitive Decline had lower average cognitive performance test scores, while those with no SCD did not score poorly. (2) "Chronic Disease and Cognitive Decline--A Public Health Issue" will be released soon; it is the fourth in a series of five data briefs. (3) The 2018 Behavioral Risk Factor Surveillance System data release looking at SCD reflects the participation of all 50 states, the District of Columbia, and Puerto Rico at least once between 2015-2018. Participation is not mandated, so this is a major accomplishment. For caregiving, only five states administered the questionnaire in 2018. (4) The "Aging & Health Matters" podcast series has included the topics, "Alzheimer's Disease--Genes Do Not Equal Destiny" and "Memory Loss is Not a Normal Part of Aging." (5) CDC has released a 30-second video with the message that memory loss not a normal part of aging. (6) CDC is supporting a Funding Opportunity Announcement--the National Healthy Brain Initiative--that is a 5-year multi-component announcement for AD/ADRD public health activities. (7) The Alzheimer's Diseaseand Healthy Aging website is increasingly including materials in Spanish because there is a high rate of AD/ADRD in the Hispanic population.



Dr. Levey and Ms. Brandt reflected on their perspectives and hopes for the future as they assumed their new roles as Council co-chairs. Dr. Levey noted that the field is halfway to 2025 since NAPA started. Effective treatments are still not available and most people with dementia and their caregivers lack access to high-quality care. On the other hand, there have been advances in genomics, changes in the ecosystem of medicine, new targets for medications, and tremendous progress in clinical trials. Dr. Levey identified the need for the Council to search for points of integration (e.g., between research and clinical care) and to set priorities for what is most important. Ms. Brandt expressed optimism that the field will achieve its 2025 goals. She noted that there is a shared goal of curing AD/ADRD and that, until this is achieved, people will receive the care they need. She identified the trifecta that supports people with dementia and their caregivers: the medical community that understands the disease; the home community, including day care, the memory café, and local residents, because that's where the care happens; and the disease community that raises its voice and provides a cure for the isolation and loneliness that accompanies a dementia diagnosis. The collaboration that she has observed between scientists, clinicians, and families has inspired her.

Dr. Lamont announced that the next meeting will be held on January 27, 2020.

The meeting was adjourned by Dr. Levey at 3:48 p.m.

Minutes submitted by Helen Lamont (ASPE).

All presentation slides are available at