National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, January 2016

• W. Mansbach  |  01-21-2016)
• I. Kremer  |  01-20-2016)
• P. Fitzgerald  |  01-20-2016)
• S. Peschin  |  01-20-2016)
• M. Ellenbogen  |  01-19-2016)
• J. Lyons  |  1-19-2016)
• W. Lum  |  01-07-2016)

My name is Dr. William Mansbach, and I am the CEO & Founder of Mansbach Health Tools, LLC and the CEO & President of CounterPoint Health Services. I am honored to sit on the Maryland Governor's Alzheimer's Disease Council.

I have been watching the progress of the NAPA Advisory Council with great interest. There are two facets that I find particularly important in meeting the needs of people with dementia and their caregivers.

The first facet is the importance of early identification of dementia. We are able to identify people as early as during the Mild Cognitive Impairment (MCI) stage and differentiate among the different subtypes of MCI. Ideally, people with cognitive impairment would receive an early diagnosis which then would allow them and their families to create realistic plans and expectations for their future care needs.

The second facet is the expansion of supports for people with Alzheimer's Disease and their families (Goal 3 of the National Plan). Strategy 3.B of the National Plan (Enabling Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being) is vitally important. To that end, my team and I have developed a program, which uses the acronym ANTHEM, to teach caregivers how to care for themselves and protect/improve their own health, including their somatic, cognitive, and emotional well-being.

We also recognize that at some point, the emphasis for people with dementia shifts from cognition to meaningful engagement -- maintaining the dignity, safety, and rights of people with Alzheimer's Disease (Strategy 3.D). Meaningful engagement also is beneficial for the caregivers and promotes positive interaction between the person with dementia and the caregiver.

I encourage the NAPA Advisory Council to expand their work with public and private sector partners to create a clear path from early identification through supporting those who have dementia and their caregivers -- until we find a cure.

I would be happy to provide additional information and resources.

My name is Ian Kremer and I serve as executive director of Leaders Engaged on Alzheimer's Disease (the LEAD Coalition). The LEAD Coalition is a diverse and growing national coalition of 80 member organizations [http://www.leadcoalition.org/who-we-are/our-members/] including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, home and residential care providers, and biotechnology and pharmaceutical companies. The LEAD Coalition is co-convened by USAgainstAlzheimer's and Volunteers of America. The coalition works collaboratively to focus the nation's strategic attention on Alzheimer's disease and related dementias and to accelerate transformational progress in: detection and diagnosis; care and support to enrich quality of life; and research leading to prevention, effective treatment and eventual cure. For more information about the LEAD Coalition, please contact me.

We all celebrate and are grateful to the Congress for the nearly 60% increase in NIH dementia research funding provided in the FY 2016 omnibus spending package. We are thankful to every organization and every advocate who made this possible. But we are mindful that far more vital science remains to be funded and that we have not yet seen commensurate progress in funding care and services for those already living with dementia and for whom the scientific breakthroughs will come too late.

For the past several years, I have said during the public comment portion of Advisory Council meetings that the National Plan needed to match the aspirational and transformative 2025 goal for biomedical progress with similarly aspirational and transformative goals for clinical care and long term services and supports, building on the remarkable work done by public and private sector agencies and millions of individuals. Today, with the presentation by the Alzheimer's Association, we have reached a tipping point. I would encourage the Council to move expeditiously to invite public comment on the recommendations being presented so that the widest possible cross-section of stakeholders and experts -- especially people living with dementia and their caregivers -- have an opportunity to offer support and suggest enhancements.

Today's agenda includes discussion of the proposed "Research Summit on Care and Services for Persons with Dementia and their Families." The summit aims to advance the research, translation, and scaling of the very programs and services that will help make real for people with dementia and their caregivers many of the recommendations from the Alzheimer's Association presentation.

These are just three among many examples of the transformative power of collaboration. I would encourage the Council to schedule presentations at your upcoming 2016 quarterly meetings three other vital collaborative projects: the Dementia Friendly America Initiative [http://www.dfamerica.org/]; the Global Alzheimer's Platform [http://globalalzplatform.org/], and the Accelerating Medicines Partnership Alzheimer's Disease Initiative [https://www.nia.nih.gov/alzheimers/amp-ad].

In closing, I offer my apologies for topics I have failed to address and I offer my thanks to others making public comments addressing such omissions. I offer my appreciation to Advisory Council members and staff who give of their minds and hearts beyond what words can express. I offer my hope to all those living with dementia and their loved ones that they will be heard, heeded, and healed through the work we all do together.

The Program of All Inclusive Care for the Elderly (PACE program) is a proven care model that provides high-quality, community-based, integrated care to some of our nation's frailest, most vulnerable citizens -- those over the age of 55 who need a nursing home level of care but seek to remain in their own homes. Studies show that people receiving care from PACE organizations live longer, in better health, with fewer hospitalizations and more time living in their homes than those receiving care through other programs. PACE is an evidence-based program in which nearly half of the people who receive care and support have been diagnosed with dementia.

As a result of the PACE Innovation Act of 2015, which was passed by Congress and signed into law on November 6, 2015, the Medicare and Medicaid programs now have the authority to pilot the PACE model with new populations including people younger than 55 and those with complex care and support needs who do not yet meet their state Medicaid agency's criteria for needing a nursing home level of care. These pilots have the potential to give people with Alzheimer's, their families and their friends access to a care option that addresses the serious gaps in our current health and long term care delivery systems. The pilots would enable PACE organizations to offer high-quality, fully-integrated care that allows people with Alzheimer's to maintain their optimal health, receive much-needed services, and live independently in the community.

Not far from where we meet today, the lives of two individuals and their families provide compelling examples of the difference access to a PACE program could make through a pilot program:

Serving People Under the Age of 55: Jim G.

Jim G. is a 54 year old Virginia resident who was diagnosed with early-onset Alzheimer's disease. Although Jim was initially enrolled in clinical trials to combat his illness, he recently ceased all treatment as his memory -- and his health -- deteriorated. Jim tried to enroll in the local PACE program, but was unable to because he was not yet 55 and therefore did not meet the program's current age eligibility requirements.

Jim was hospitalized in 2014 for a lung infection caused by "silent aspiration", which occurs when the swallowing function is weakened by Alzheimer's. A once vibrant athlete, Jim lost almost 40 lbs. Initially, Jim stayed home alone during the day, where he was isolated and struggled with activities of daily living, such as personal grooming, household chores, and child care. Karen struggled to care for Jim and tend to her school-aged children, while also holding down a full time job, but eventually had to quit her job to care for him full time. Unfortunately, Karen discovered that his needs were more than she could handle. Following a psychotic break and a week as a psychiatric inpatient, Jim was permanently placed in a memory care unit near their home. Karen had to use "crowd-sourcing" to raise funds for Jim's treatment.

This heartbreaking situation might have been avoided had Jim been able to enroll in PACE. Jim could have received day-time support that would allow him to continue to live at home with his family. He could have received therapies to help him stay physically strong, and primary care to help avoid silent aspiration and other health complications. PACE has significant experience with dementia, and might have been able to avoid or better managed his psychiatric deterioration. And Karen and her family would have received much needed respite services, emotional and social support, and peace of mind, perhaps helping her maintain her employment.

Serving People At-Risk of Nursing Home Placement: Terry B.

In testimony before the District of Columbia's Council, Terry B. described her work as an enrollment coordinator at a PACE program as "the most rewarding job I ever had in my life. I was able to help older adults and their families find a solution to some very heartbreaking issues and could substantially see the huge difference this program made in their lives -- from being totally at the bottom of despair to living a full life and thriving in their final years."

At the age of 56, Terry was diagnosed with younger onset dementia, and has now reached the point where she can no longer work. She recently completed her term as a member of the national Alzheimer's Association Early-Stage Advisory Group, helping the Association provide the most appropriate services for people living with early-stage dementia, raise awareness about early-stage issues and advocate with legislators to increase funding for research and support programs.

Terry observed that she is "not yet ready nor qualified to need the PACE program, but when I do I know they will be there for me and my family." Through a pilot program, Terry and her family would be able to access the PACE program when they determine they need its support and integrated care rather than waiting until Terry meets the state's nursing home level of care criteria. This earlier access to PACE can support Terry's continued quality of life, in a home setting that also strengthens the caregivers in her life.

Providing Access to PACE for People with Alzheimer's

The pilots made possible by PACE Innovation Act of 2015 would help Jim, Terry and others like them. These pilots would allow CMS to test and adapt the PACE model for individuals under the age of 55 and those who are not yet in need of a nursing home level of care but whose care delivery systems and supports are being strained as they strive to maintain their quality of life. Specifically, the following are benefits that this model can offer to people with Alzheimer's, their families, and policymakers seeking to improve their care options:

• Access to team based, disability competent care for an underserved, high cost population.
• Improved care coordination with timely and accessible primary care reducing unnecessary emergency, inpatient and long term care utilization.
• Reduced nursing home utilization enabling nursing home eligible individuals to live independently in the community.
• Competent, consistent and quality attendant care services for activities of daily living.
• Social network of care with innovative physical and virtual day programs to enhance independence and employability.
• Extensive use of adapted technologies -- computing, telehealth, social networking, environmental controls, mobility -- to increase independence, provide enhanced abilities at reduced cost.
• Significant savings to Medicaid and Medicare -- payments to PACE programs are less than Medicaid would pay for a comparable population in its other programs and PACE provides savings to the Medicare program.
• Relocation of individuals from nursing homes into community settings by partnering with state and local housing organizations to fund development of accessible, affordable and safe housing.

By supporting pilots that allow for PACE to serve younger people with Alzheimer's and those who are struggling to live in their own homes, the Advisory Council can be assured that they are supporting a proven, cost-effective care model that will help achieve the goals of better care coordination, and higher quality of life.

Thank you for the opportunity to address the Council on these important matters.

My name is Sue Peschin and I serve as president and CEO of the Alliance for Aging Research. Thank you for the opportunity to provide a public comment. I have two issues I want to cover today.

The first issue is President Obama's forthcoming FY 2017 budget, which I realize is already baked and will be released February 8, but I am putting in one last push for the record. The $350 million Congressional boost for FY 16 was much appreciated, but we need upward momentum and we need this Administration to make its last swing at bat big and bold. Our ask for FY 2017 is a $500 million increase over FY 2016 enacted funding for aging research across the NIH; and a minimum increase of an additional $400 million in Alzheimer's disease research at NIH over the FY 2016 enacted level.

The second issue is related to healthcare-associated infections, which the CDC estimates kill 380,000 residents in nursing homes, skilled nursing facilities, and assisted living facilities annually. I am talking about infections at the NAPA meeting because 1) nearly 2/3 of Medicare nursing home residents have Alzheimer's disease and other dementias and 2) because antibiotic-resistant, deadly types of diarrheal infections such as C. diff are skyrocketing in nursing home settings and they are a lousy way to die.

CMS included changes in infection prevention and control in nursing homes and skilled nursing facilities as part of its larger proposed "mega rule" to improve overall quality and safety. Unfortunately, the proposed rule on infections is too broad to make much of an impact. Without mandates for specific rules on antibiotic stewardship, infection surveillance, prevention, and control, many otherwise preventable infection-related illnesses and deaths will continue unabated.

Up to 70% of nursing home residents receive one or more courses of systemic antibiotics in a given year, yet studies show that anywhere from 40% to 75% of these antibiotics may be unnecessary or inappropriate. Harms from antibiotic overuse significantly threaten the health of nursing home residents. Yet, in its proposed rule, CMS gives no guidance about how facilities should perform antibiotic stewardship. CMS should mandate the CDC's evidence-based "Core Elements of Antibiotic Stewardship for Nursing Homes." This program would also provide state surveyors with guidelines to help them monitor effectiveness.

Another concern about the proposed rule is the lack of instruction for staff on how to conduct infection surveillance. Currently, all CMS-certified nursing facilities use the Minimum Data Set (MDS) for collecting information on infections that impact longer-stay residents. However, the MDS offers data only quarterly, it does not capture multiple infections, timing of infections, or any data on short-stay residents admitted from the hospital setting for rehabilitation.

For the last several years, 17,000 hospitals and other acute care settings have used the CDC's National Health Safety Network (NHSN) surveillance system to keep track of infections. CDC research shows that when healthcare facilities, care teams, and individual practitioners recognize infection problems and implement specific steps for preventing them certain infection rates can decrease by more than 70%. Nursing homes and skilled nursing facilities should be required by CMS to adopt the NHSN system for their infection surveillance.

Last, CMS should mandate all nursing home and skilled nursing facility staff who work directly with residents to get an annual flu vaccine. This one is a no-brainer--please do it.

CMS has a chance to prevent suffering for people with Alzheimer's disease and related dementias. As physician and author Atul Gawande writes, "Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person's life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking."

I have noted that there are two representatives for all non-federal NAPA Advisory Council categories. That is EXCEPT for what many perceive as the most informed category - 'persons living with dementia.' As a person who is living with dementia, I find this discriminatory and problematic. I've brought it up to many here including top management. Your lack of action contributes to the stigma we must deal with.

I have made multiple requests to dial in. At the last meeting you finally agreed to look into it. I asked this time and was denied. I protest this decision as you have effectively shut out my voice.

(READER: Don't say any anything for 30 seconds)

I do hope you make the proper allowances as per the recommendations of the ADA. A government agency said you must provide reasonable accommodations for me. That is all I ask for.

My name is Jodi Lyons, and I am an author and care consultant who helps older adults find the care they need throughout the country. Most of my clients have some form of dementia.

For the past few years, I have attended the Advisory Council meetings. I've been intrigued and impressed by the process of coordinating among various government agencies - including State, Local, and Federal partners. I look forward to the next phase of the Plan, which will include additional programs to provide practical solutions for people with dementia and their caregivers. Below are some sample actions that would provide support to the continued development of such programs:

1. Establish additional public/private sector partnerships to develop practical, implementable plans and solutions for people with dementia and their caregivers. This includes addressing medical, financial, legal, practical, family/caregiver, and housing needs.
2. Expand the scope of public/private sector partnerships to include more private sector companies and caregiver organizations that have "boots on the ground" and provide care and support to people with dementia and/or their caregivers.
3. Continue to identify and work with industry experts and thought leaders.
4. Create an educated consumer base through developing and disseminating accurate and culturally sensitive education, training, and support materials.
5. Identify and partner with programs that help to keep the caregivers healthy -- including cognitive and emotional health.

The above suggestions reflect my understanding that identifying and providing practical solutions requires multi-sector participation and coordination. I would be pleased to provide additional information as requested.

Alzheimer's disease and related dementias are a growing concern within the Asian American and Pacific Islander (AAPI) community. Age is considered the greatest risk factor for Alzheimer's disease and AAPI women have the highest life expectancy (85.8 years) of any ethnic group.ⁱ Barriers that prevent the early diagnosis and timely interventions and care of Alzheimer's disease and related dementias among AAPIs include: cultural beliefs and language, lack of awareness that contributes to stigma, and limited accessible and culturally proficient services.ⁱⁱ Further, many AAPI older immigrants may feel discouraged to access aging and healthcare services (including screening for dementia) for several reasons: unfamiliarity with medical practices, having to locate interpreters, and the fear of miscommunication that may lead to misdiagnosis and improper treatment.ⁱⁱⁱ Language and cultural barriers prevent them from full participation to the U.S. healthcare system, and studies have shown that "linguistic discordance," or miscommunication between patients and practitioners, is an implication of health outcomes and quality of care.^iv

The National Asian Pacific Center on Aging (NAPCA), which preserves and promotes the dignity, well-being, and quality of life of AAPIs as they age, respectfully requests that the Advisory Council on Alzheimer's Research, Care, and Services dedicate a council meeting to discuss (1) the effects of dementia on and (2) how to outreach to AAPI and other diverse communities.

Raising awareness of the impact of Alzheimer's disease and related dementias on AAPI and other diverse communities is an important first step to ensure that AAPI elders and their families, regardless of language, cultural, economic, or other barriers, will have access to and equity in the service, benefits, and programs that are available to all American seniors. Thank you for considering this request.

1. Administration on Aging. Serving Asian and Pacific Islander families. Home and Community-based services for people with dementia and their caregivers. http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/Toolkit5_AsianPacificIslanders.pdf
2. Alzheimer's Association of Los Angeles Riverside and San Bernardino Counties. Asian and Pacific Islander Dementia Care Network Project. Phase 1 Focus Group Report. http://www.alz.org/national/documents/C_EDU-APIDementiaCare.pdf
3. Clough, J., Lee, S., Chae, D., Barriers to health care among Asian immigrants in the US: A traditional Review.http://muse.jhu.edu/journals/journal_of_health_care_for_the_poor_and_underserved/v024/24.1.clough.html
4. Ibid.