National Alzheimer's Project Act: Public Comments from Advisory Council Meeting, November 2020

I am a Project Director at Education Development Center. Thank you for the opportunity to make these public comments. I prepared these comments with Dr. Epstein-Lubow of Brown University and Dr. Reuben of UCLA. These comments are our own.

We want the Assistant Secretary for Planning and Evaluation (ASPE) and this Advisory Council to be informed that a report entitled Recommendations to Improve Payment Policies for Comprehensive Dementia Care[1] has been published in the Journal of the American Geriatrics Society. The report includes recommendations for improving access to comprehensive dementia care through payment reform, research, education, and advancement of a population health approach to coverage based on risk and need. HHS should consider the recommendations in this manuscript.

Our report also describes six working models in the US for dementia care that improve quality and achieve better clinical outcomes for persons living with dementia and caregivers without increasing costs. Yet, dementia care using these models is not widely available. In November 2019, we convened a one-day meeting focused on “Payment Models for Comprehensive Dementia Care” which led to this report. Meeting participants included over fifty clinicians, researchers, advocates, payers and other leaders with expertise in dementia care and payment; the meeting was conducted with support from The John A. Hartford Foundation, Hebrew Senior Life, and Education Development Center.

In addition to our report, two associated articles were published concurrently in JAGS, a clinical investigation titled The Effects of Dementia Care Co-Management on Acute Care, Hospice, and Long-Term Care Utilization,[2] by Lee Jennings and colleagues, and an editorial titled, How Do We Make Comprehensive Dementia Care a Benefit?[3] by Chris Callahan and Kathleen Unroe. Dr. Jennings and Callahan were also featured in a Geri-pal podcast called It's Time for Comprehensive Dementia Care.

In addition to reviewing these important publications, HHS should act now to advance payment reform efforts through three actions:

1. Continue work previously conducted by ASPE and included in its report Examining Models of Dementia Care, including studying how best-practice models of dementia care have been modified during the COVID-19 pandemic;
2. Convene at least one work group, or invite presentation at this Advisory Council from an external work group addressing payment reform for comprehensive dementia care; and,
3. Monitor and report on how the inclusion of dementia as a risk adjustment modifier in the CMS HCC coding affects the definitions of populations of people living with dementia, the quality and types of care received, and the health outcomes of those individuals.

These recommended actions are in alignment with the National Plan to Address Alzheimer’s Disease’s Strategy 1.E and all Strategies under Goal 2: Enhance Care Quality and Efficiency. The recommended actions are also in alignment with the 2020 Recommendations from the Public Members of the Advisory Council, including Cross-Cutting Recommendations 1 and 3; Clinical Care Recommendations 3, 4 and 5; and all five of the Recommendations regarding Long-Term Services and Supports.

Thank you for considering these comments.

REFERENCES

1. https://onlinelibrary.wiley.com/doi/10.1111/jgs.16807
2. https://onlinelibrary.wiley.com/doi/10.1111/jgs.16667
3. https://onlinelibrary.wiley.com/doi/10.1111/jgs.16805

I am an adult neurologist with a private practice neurology group in southern New Jersey. We are affiliated with the University of Pennsylvania as well as with the Virtua Health System. I am the co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (the "NTG"), past president and a Board member of the American Academy of Developmental Medicine and Dentistry, and chair of the Adults with Intellectual and Developmental Disabilities Section within the American Academy of Neurology. I specialize in the neurologic care of adults with intellectual and developmental disabilities.

Today, I want to provide the Council with vital information and insights on a major issue in the healthcare of those aging with intellectual disability. As the Council knows the number of people in the United States who are aging and at risk of cognitive decline is growing, this is particularly alarming for people with Down syndrome, a major intellectual disability, who are at a very high risk of developing early onset Alzheimer’s disease.

There are a number of unique issues relevant to the population of persons with intellectual and developmental disabilities which make their healthcare needs particularly challenging. These include having a lifelong disability and a higher rate of comorbidities, aging family caregivers, high turnover of direct support professional staff, traditionally poor reimbursements for healthcare, and a lack of education and training on lifelong disabilities and aging/dementia in medical schools and residency and fellowship programs, and a lack of curriculum and formalized care guidelines.

The long-term care for individuals with dementia requires the integration of a multidisciplinary care approach which does not exist in most areas of the United States for individuals with intellectual and developmental disabilities. The lack of coordinated and quality services often leads to poorer outcomes of care in later life, including great levels of frustration, fear of the fear and tremendous stress upon the people delivering the care (which often may include aging parents and direct support professionals) who all too often are not prepared and supported to take care of this complex and sadly progressive disease.

Access to quality services will require:

• Appropriate assessments and diagnostics
• Reimbursements commensurate with time spent with complex-needs patients
• Tertiary dementia care center supports for second opinions and complex cases
• Development of education and training of Nurse Practioners, Primary care physicians, and specialty care and behavioral health services
• Healthy aging programs to help mitigate age related cognitive decline
• Community based support services to include care coordination, physical and occupational therapy, speech and cognitive therapy, nursing services, behavioral care services, primary and specialty care services.
• Diagnostic services within easy reach of families for the accurate diagnosis of dementia in adults with intellectual disability

As people with intellectual and developmental disabilities are more prone to survive to older age, the dread of Alzheimer’s disease and other dementias is ever increasing and the needs for care and supports will only continue to grow. The newly funded five-year grant projects by the Centers for Disease Control and the Administration for Community Living focusing on addressing some of these issues are a start, but our hope is that more will follow. The NTG, together with several partner organizations, plans to issue a VISION 2021 document outlining how some of these dementia education, care, and diagnostic deficiencies can be addressed.

In closing, I greatly appreciate the effort that the NAPA council has taken in its recognition that people with intellectual and developmental disabilities and have to be taken into consideration especially those with Down syndrome, but access to quality and reliable long term care services still remain pathetically absent. Support from the Council to help address these needed services is warranted and appreciated.

Sadly I have a conflicting commitment on Nov 9 that I cannot miss or move. Thank you for holding this meeting and asking for input.

As Geriatrician in the VA, I accept many vets to the CLC that have severe cognitive deficits with MOCA <10 but no diagnosis in the chart and no documentation of what should happen when they cannot care for themselves. At that point vets lack the capacity to decide what care they should receive, and the insight to follow through. We have to have mechanisms in place for primary care to screen veterans at any point of contact when concerns arise. All team members from the check-in clerk to the physician need to be knowledgeable about dementia and Alzheimer’s so we can plan for and put in place, care plans and safe environments.