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Hopkins’ Economics of Alzheimer’s Disease & Services Center

Center News and Updates

HEADS Expert Spotlight: Alden Gross, PhD

April 2022

Alden Gross, PhD, is an associate professor in the Department of Epidemiology at the Johns Hopkins Bloomberg School of Public Health. He joined the HEADS Pilot Core leadership last July and serves as a member of the Center’s Executive Committee.

Tell us a little bit about your research. How does it contribute to the overall goal of the HEADS Center?
My work is focused on developing novel methods for measurement of cognitive health and functioning in older adults. This entails both classification algorithms for dementia, as well as continuous measures of general and domain-specific cognitive functioning. This work is related to HEADS in the sense that if we aren’t measuring something properly, then, we cannot manage it. My most impactful work integrates advanced psychometric methods with substantively and clinically important questions.

Share a current project you are working on and any early findings.
Currently, I am working with colleagues to develop a measure of early cognitive impairment – during the preclinical Alzheimer's disease phase – in the Biomarkers for Older Controls at Risk for Dementia study. The goal of this study "Contribution of sensorimotor function to risk and pathogenic mechanisms of Alzheimer's disease and related dementias", funded by an NIA R01 and led by Drs. Schrack and Agrawal, is to identify markers of impairment earlier in the life course and to study sensorimotor correlates of early deterioration. I am a Multiple Principal Investigator with Dr. Lindsay Kobayashi for another study "Socioeconomic and Cardiovascular Sources of Cross-National Variation in Cognitive Health Among Older Adults" funded by an NIA R01, which is leveraging cognitive tests from the Health and Retirement Study and National Health and Aging Trends Study to mutually inform dementia algorithms in both studies. That work could improve our dementia phenotypes in several large, nationally representative studies. In a third project supported by the Gateway to Global Aging and an R01 that I lead, we are statistically co-calibrating continuous measures of general and domain-specific cognitive functioning across the U.S. and several other studies that have administered harmonized cognitive assessment protocols. This work will facilitate entire new areas of research across nations in cognitive aging.

Affiliates in Action: Danielle Powell and Stephanie Nothelle Awarded by Associations

March 2022

Danielle Powell warecently awarded the Meritorious Poster Submission at the American Speech-Language-Hearing Association conference in 2021 and the New Investigator Award at the Annual Scientific and Technology Conference of the American Auditory Society in 2022. Stephanie Nothelle received the 2022 Best Poster Award for "Frequency and Implications of Co-occurring Serious Illness in Older Adults" at the Annual Assembly of the American Academy of Hospice and Palliative Medicine in February 2022. 

HEADS Pilot PI Update: Dementia and Vision impairment: Economic outcomes for patients and caregivers

February 2022

Varshini Varadaraj, MD, MPH, Year 2 Pilot Principal Investigator and 2021 HEADS Virtual Workshop for Early-Stage Investigators participant, will be presenting a poster on her pilot project at this year’s NHATS/NSOC Dementia Caregiving Conference on May 2-3, 2022. The poster will highlight findings from the pilot project “Dementia and Vision impairment: Economic outcomes for patients and caregivers” and examines economic outcomes for older adults with dementia and vision impairment and their caregivers. The findings highlight disparities in financial wellbeing for older adults with vision and cognitive disabilities, and their caregivers, and suggest a need for better integration of financial support programs into their overall care. Learn more about HEADS Pilot projects

Insights from the HEADS Center’s Translation Advisory Panel

January 2022

The HEADS Center’s Translation Advisory Panel (TAP) met in September for its second convened meeting since the launch of the Center. The TAP is panel is a group of seven dynamic leaders with deep expertise in diverse areas relevant to AD/ADRD care, costs and services delivery in the U.S., and globally. One role for the TAP is to keep the Center’s leaders and scientists apprised of up-to-date developments in relevant fields (e.g., industry, health care delivery and financing, policy), and to guide and facilitate the Center’s work to ensure the research and science is compelling and relevant to stakeholders and effectively communicated to key audiences and networks so that the impact of research on practice and policy can be maximized. The TAP had a number of noteworthy updates, summarized below:

  1. Disparities in outcomes (mortality, isolation, mental health, poor clinical/functional/behavioral outcomes) and inequities in care delivery (workforce shortages, burnout) for persons with AD/ADRD due to the COVID-19 pandemic were staggering and should be further evaluated quantitatively and qualitatively and data used inform policy, practice and research.
  2. Identification, validation, and integration of outcomes that are meaningful and that actually matter for persons living with AD/ADRD and their care partners into quality of care metrics is needed.
  3. Care coordination-focused models that could benefit persons living with AD/ADRD which aim for higher quality of care better outcomes and lower costs are the focus of new policy initiatives being worked on in Congress (Comprehensive Care of Alzheimer’s Act) and new alternative payment models being implemented by CMS (Primary Care First).
  4. There are two important, newly released national AD/ADRD focused reports that provide new data and insights on disease prevalence burden, disparities, and promising new areas of research: The Alzheimer’s Association’s 2021 Alzheimer’s Facts and Figures (https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf ), and Women's Health Access Matters (WHAM) Report on Societal Impact of Research Funding for Women’s Health in Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias (https://thewhamreport.org/wp-content/uploads/2021/10/TheWHAMReport_CAD_technical.pdf ).
  5. Several training, data resources, and network initiatives that may be relevant to HEADS scientists are available or in the works including the A-LIST (www.alist4research.org), an online community of over 8000 persons interested in brain health that could be access by researchers to survey members on their experiences and perspectives; a new Summer Research Institute training opportunity funded by NIA and delivered by the Alzheimer’s Association (Applications for next year open 11/8- alz.org/summerinstitute); and practice-based research networks which are currently being explored by NIA as an option to accelerate the translation of research to practice.
  6. Prioritization of research targeting risk reduction and dementia prevention is gaining momentum and may result in an update in the form of a 6th goal added to the national NAPA plan in the near future, and the resulting investment may have significant long term epidemiological and economic implications.
  7. Several bills have been passed or are under consideration in Congress relevant to NIH, ACL and other agencies intended to accelerate research and availability and access to service to individuals and families in need, particularly for services related to home and community based care (e.g., American Rescue Plan Act; paid leave proposals).

We will look forward to next Fall when the TAP provides another annual briefing on insights from their world to inform the HEADS center leaders and scientists!

HEADS Pilot PI Update: Patient cognitive impairment associated with higher home health care delivery costs

October 2021

Julia Burgdorf, PhD, Year 1 Pilot Principal Investigator, along with co-authors Jennifer Wolff and Aditi Sen, disseminated findings from her 2020 award year pilot project via publication in Health Services Research and presentation at the Gerontological Society of America’s 2021 Annual Meeting. The project investigated whether home health agencies incurred higher care delivery costs when caring for Medicare patients with cognitive impairment, compared to similar patients without such impairment. The researchers found that across the first 30, 60, and 120 days of caring for a patient with cognitive impairment, home health agencies incurred additional costs of $186, $282, and $741 dollars, respectively. All findings were statistically significant. Learn more about HEADS Pilot projects

JH AGING & ALZHEIMER’S CENTERS JOIN FORCES TO PARTICIPATE IN THE 2021 WALK TO END ALZHEIMER’S ON OCTOBER 23

September 2021

On October 23, the HEADS Center is teaming up with the Alzheimer’s Disease Research Center, Memory & Alzheimer’s Treatment Center, Alzheimer’s Disease Resource Center for Minority Aging Research, and the Center on Aging and Health to participate in the 2021 Greater Baltimore Walk to End Alzheimer’s. The in-person walk is taking place at the Hunt Valley Towne Centre and virtual ‘walk from home’ options can be done at any location of your choice, including your community, track, trail, and reservoir. In addition, you can engage in many Walk-day experiences by downloading the ‘Walk to End Alzheimer’s’ app, adding stickers to your photos and sharing on social media. Wear purple attire, carry colorful flags, and don’t forget to tag our team on Twitter using #JHWalks.

Register for the Walk and support our team, JH Aging & Alzheimer’s Centers, through fundraising efforts. For questions, please contact Ashley Scott at ascott41@jhmi.edu.

CENTER FACULTY CHANEE FABIUS, PHD, AND QUINCY SAMUS, PHD, RECIEVE NEW NIA IMPACT COLLABORATORY AWARDS

August 2021

Two HEADS Center faculty were recently awarded funding from the NIA Impact Collaboratory to conduct embedded pragmatic clinical trials of non-pharmacological interventions within healthcare systems to improve care for people living with Alzheimer’s Disease (AD) and AD-related dementias (ADRD) and their care partners. Chanee Fabius, PhD, Year 1 Pilot principal investigator, was awarded funding as part of the Career Development Award Program and will be investigating a project titled “Engaging and Integrating Direct Care Workers in Care Delivery for Persons Living With Dementia in the Community”. Quincy Samus, PhD, Research & Dissemination Core deputy director, was awarded funding as part of the new Health Care Systems Embedded Research Scholars Program and will be investigating a project titled “Health Care Systems Embedded Research Program: MIND at Home at Centene Corporation”.

JENNIFER WOLFF, PHD, RECENTLY PRESENTED two new articles AT 2020 DEMENTIA CARE, CAREGIVING, AND SERVICES RESEARCH SUMMIT

July 2021

The review and editorial articles co-authored by HEADS Center Co-director, Jennifer Wolff, PhD, and published in the July’s issue of The Journal of the American Geriatrics Society and Journal of the American Medical Directors Association, summarized three areas of emerging science that are likely to grow in importance given advances in measurement, technologies, and diagnostic tests that were presented at the 2020 Dementia Care, Caregiving, and Services Research Summit. Read more here: Emerging topics in dementia care and services and The future of dementia care, caregiving, and services research

SYMPOSIUM ON NEW FDA APPROVED ALZHEIMER'S DRUG, ADUCANUMAB, EXPLORES THE DEBATE ABOUT THIS NEW TREATMENT WITH EXPERT PANELISTS HOSTED BY THE HEADS CENTER AND HBHI

July 2021

On June 7, 2021 the FDA approved a new treatment for Alzheimer’s, yet there remains a contentious debate about whether the drug is effective. While this debate rages, millions of people may be eligible for this drug costing $56,000/year which, in one stroke, might double the nation’s spending on prescription drugs. What happens next? Hopkins’ Economics of Alzheimer’s Disease and Services (HEADS) Center and the Hopkins Business of Health Initiative (HBHI) assembled experts on July 23, 2021 for a virtual symposium to lay the groundwork to inform action steps that would best leverage the opportunities and limit the challenges tied to the approval of aducanumab. Watch symposium recording here.

The Maryland Virginia I. Jones Alzheimer's Disease & Related Disorders Council's Chair, Quincy Samus, PhD, Leads the Charge for the Maryland State ADRD Plan

July 2021

Quincy Samus, PhD, HEADS Center Research and Dissemination Core deputy director and Johns Hopkins School of Medicine health services researcher dedicated to improving the lives of persons living with dementia and their caregivers, was selected to chair the Maryland Virginia I Jones Alzheimer’s Disease & Related Disorders (ADRD) Council starting in 2020. Samus leads the 17 member Council to examine needs of Marylanders living with dementia and their care partners and to identify opportunities to build on and enhance Maryland’s policies and efforts. The Council is currently drafting a revised Maryland State ADRD Plan that is intended to provide Marylanders and it’s leaders with an informed and proactive roadmap for ADRD that enhances key areas important to individuals, families, and health systems/networks and that aligns with national level strategies, resources, and opportunities.

New Summary Report from the National Research Summit on Care, Services, Support for Persons with Dementia and their Caregivers 

February 2021

Read the new National Institute on Aging (NIA) summary report developed from the National Research Summit on Care, Services, Support for Persons with Dementia and Their Caregivers held during the summer of 2020. The summit was co-chaired by center director and summit steering committee Jennifer Wolff and David Reuben of UCLA. View the full report here.

Cost-effective Care coordination for People with Dementia At Home

January 2021

A study led by Amber Willink and Quincy Samus, and co-authors Karen Davis, Deirdre Johnston, Betty Black, Melissa Reuland, Ian Stockwell, Halima Amjad, and Constantine Lyketsos published in Innovation in Aging suggests that hospitalization risk reduction strategies may benefit from understanding and addressing caregiving circumstances. Managed-care plans with the flexibility to engage community health workers could benefit from a low-cost, high-touch intervention to meet the needs of enrollees with dementia. Read more

SHARING Choices: A Pilot Study to Engage Family in Advance Care Planning of Older Adults With and Without Cognitive Impairment in the Primary Care Context

December 2020

A study led by center director Jennifer Wolff and co-authors Danny Scerpella, Kimberly Cockey, Naaz Hussain, Tara Funkhouser, Diane Echavarria, Jennifer Aufill, Amy Guo, Danetta Sloan, Sydney Dy, Kelly Smith, and SHARING Choices Investigators in the American Journal of Hospice and Palliative Care found that SHARING Choices, an advance care planning intervention, was acceptable among older adults with and without cognitive impairment and may increase advance directive completion. The study engaged family in advance care planning of older adults with and without cognitive impairment in the primary care context. Patients remarked that SHARING Choices clarified communication and preferences while family reported a better understanding of their role in advance care planning and communication. SHARING Choices is now being tested in a pragmatic trial at 55 primary care clinics in the Baltimore-Washington area. Read more.

Older Adults with Dementia Exhibit Financial "Symptoms" Up To Six Years Before Diagnosis

November 2020

A new study led by researchers at the Johns Hopkins Bloomberg School of Public Health and the Federal Reserve Board of Governors found that Medicare beneficiaries who go on to be diagnosed with dementia are more likely to miss payments on bills as early as six years before a clinical diagnosis.

The study also found that beneficiaries diagnosed with dementia who had a lower educational status missed payments on bills beginning as early as seven years before a clinical diagnosis as compared to 2.5 years prior to a diagnosis for beneficiaries with higher educational status.

The study, which included researchers from the University of Michigan Medical School, also found that these missed payments and other adverse financial outcomes lead to increased risk of developing subprime credit scores starting 2.5 years before a dementia diagnosis. Subprime credit scores fall in the fair and lower range.

The findings, published online November 30 in JAMA Internal Medicine, suggest that financial symptoms such as missing payments on routine bills could be used as early predictors of dementia and highlight the benefits of earlier detection.

Read more here.

Lead author, Lauren Hersch Nicholas, PhD, associate professor in the department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health, is quoted in the Washington Post, the Boston Globe, and the Miami Herald

Do Caregiving Factors Affect Hospitalization Risk among Disabled Older Adults? 

September 2020

A study led by Halima Amjad and co-authors John Mulcahy, Judith Kasper, Julia Burgdorf, David Roth, Ken Covinsky, and Jennifer Wolff in the Journal of the American Geriatrics Society examined a nationally representative cohort of older adults with disabilities. Increased risk of hospitalization at 12 months was associated with having a primary caregiver who helped with healthcare tasks, reported physical strain, and provided more than 40 hours of care weekly. The findings suggest that hospitalization risk reduction strategies may benefit from understanding and addressing caregiving circumstances. Read more.

Hopkins’ Economics of Alzheimer’s Disease and Services Center Launched to Address Alzheimer's Disease and Related Dementias

July 2020

The Hopkins’ Economics of Alzheimer’s Disease and Services (HEADS) Center is led by Jennifer Wolff, PhD, Eugene and Mildred Lipitz Professor of Health Policy and Management and Director of the Roger C. Lipitz Center for Integrated Healthcare and Daniel Polsky, PhD, Bloomberg Distinguished Professor of Health Economics and Director of the Hopkins Business of Health Initiative, who received a $4.5 million dollar grant from the National Institute on Aging over a five-year period to establish the center.

Alzheimer’s disease is a progressive brain disorder that slowly destroys memory and thinking skills and limits the ability to carry out basic daily activities. Health care and long-term services and supports are not well organized or financed to meet the needs of the 5.8 million Americans living with Alzheimer’s disease. As a result, the financial consequences are significant and quality of care is too often poor, leading to undue burden on those who are affected by the disease. As the numbers of persons who are living with the disease are expected to grow in the coming years, the challenges for individuals and society will be compounded.

The Center will take a cross-school, interdisciplinary approach to build collaborations among faculty across the University. The Center will include the following initiatives:

  • Funding to support novel pilot studies to advance population-based research and attract investigators to the field,
  • The development of a high-capacity, secure computing environment to support novel population-based data analyses, and
  • Community-building activities to support use of research resources, the dissemination of scientific findings, and partnerships with key stakeholders and advocacy organizations to translate findings into policy and practice.