“Can you imagine your dad telling you:
Then he woke up cheerfully the next day, not remembering anything?”
I never loved you, I wish you were never born.
BEYOND MEMORY LOSS:
BEYOND MEMORY LOSS:
Disparities in the United States Alzheimer’s Care System
Disparities in the United States Alzheimer’s Care System
E l i a m C h a n g , H e e b a M o m e n ,
S o m a i y a M o n o w a r , Y u x u a n R a n e y Y a n g , a n d T u a n K h a i N g u y e n
“It affects us emotionally as well because
seeing your parents digress like this is really
hard, and there is nothing you can do about it, so yes it causes depression, it causes anxiety, it causes emotional sadness.”
- Tonya Brown
(Daughter of Alzheimer’s Patients)
Motivation
People Interviewed
Tiffany Cloud-Mann, M.Ed.
Eldercare Coach & Community Partnerships Manager
Agewell Middle TN
Nicolette Wise, MPH, CHES
Social Determinants of Health Director TennCare
Susan Yenke
Daughter of Alzheimer’s Patient Vanderbilt University
Darin Gordon
Director of Tennessee’s Medicaid program TennCare
Elisabeth Dykens, PhD
Professor of Psychology and Human Development
Vanderbilt Kennedy Center
Mary Ellen Koran, MD, PhD Assistant Professor of Clinical
Radiology & Radiological Sciences Vanderbilt Memory and
Alzheimer's Center (seminar)
Jingqiong Kang (Katty), MD, PhD Associate Professor of Neurology
Vanderbilt University Medical Center Brett A. Parker, MD
Neurologist
Ascension Medical Group
Alexander Heaton, MA
Former Policy Advisor for Public Safety Office of the Mayor at the City of Chicago
Dawne Bunn
Regional Leader - TN, AL, MS, and LA Alzheimer's Association®
Mary Kate Schroeter, MSA Humanitarian Advisor
United States Agency for International Development (USAID)
Tonya Brown
Caregiver of Alzheimer’s Patient the Wond’ry
Medical Team Nurse
Physical Therapist
Policy- Makers Food and Drug
Administration (FDA)
Researchers
Family
Non-Profits Pharmaceutical
Companies
Educational Institutes
Physician
Medical
Institutes Biotechnology Companies
Alzheimer’s Association Alzheimer’s
Research Foundation
Home Caregivers Spouse
Disparities in the United States Health Care
System National
Institutes of Health (NIH)
Child
Relative
Community Leaders
Media Figures
Faith Leaders Private Insurance
companies
Insurance System Medicare
Medicaid
Long-Term Care Facilities
Nursing Homes Care
Units
Stakeholder Map
people interviewed
Medicaid
Biomedical Companies
Medical Institutes
Educational Institutes Pharmaceutical
Companies Private
Insurance
Food and Drug Administration (FDA)
National Institutes of Health (NIH)
Nurse
Physical Therapist
Physician
Alzheimer’s Association
Alzheimer’s Research Foundation Media
Figures
Faith Leaders
Home Caregivers
Spouse
Child Relative
Nursing Homes
Care Units
Medicare
Power-Interest Map
H ig h P o w e r H ig h P o w e r
H i g h I n t e r e s t H i g h I n t e r e s t Low Interest
Low Interest
L o w P o w e r L o w P o w e r
Power = ability to change the disparities within Alzheimer’s
Interest = desire for change disparities within Alzhiemer’s Power = ability to change the disparities within Alzheimer’s
Interest = desire for change disparities within Alzhiemer’s
“We are not a Medicaid expansion state and that is largely a political decision that I have no power in.”
“We are not a Medicaid expansion state and that is largely a political decision that I have no power in.”
Nicolette Wise, MPH, CHES
Social Determinants of Health Director TennCare
Primary Care Consultation
Specialist
Consultation Post-diagnosis Nursing Home
Symptoms
Depression Bargaining
Anger
Denial Acceptance
Advocacy
Medication and treatments
Disclosure of results Laboratory
Tests Payment
or Insurance Laboratory Examinations
Physical therapy Pre-disposition
Checkups
Home Nurse or Caregiver Physical and
Mental Exams
Gait and Independent
Activity
Social abilities and personality
changes
Clinical Testing Process
Family and Patient Feelings
Disease Management
Death
Journey Map
Primary Care Consultation
Specialist
Consultation Post-diagnosis Nursing Home
Symptoms
Depression Bargaining
Anger
Denial Acceptance
Advocacy
Medication and treatments
Disclosure of results Laboratory
Tests Payment
or Insurance Laboratory Examinations
Physical therapy Pre-disposition
Checkups
Home Nurse or Caregiver Physical and
Mental Exams
Gait and Independent
Activity
Social abilities and personality
changes
Clinical Testing Process
Family and Patient Feelings
Disease Management
Journey Map
Death
Primary Care Consultation
Specialist
Consultation Post-diagnosis Nursing Home
Symptoms
Depression Bargaining
Anger
Denial Acceptance
Advocacy
Medication and treatments
Disclosure of results Laboratory
Tests Payment
or Insurance Laboratory Examinations
Physical therapy Pre-disposition
Checkups
Home Nurse or Caregiver Physical and
Mental Exams
Gait and Independent
Activity
Social abilities and personality
changes
Clinical Testing Process
Family and Patient Feelings
Disease Management
Journey Map
“Often, the patient doesn’t know what is going on. It takes a third party to get to the diagnosis.”
“Often, the patient doesn’t know what is going on. It takes a third party to get to the diagnosis.”
Susan Yenke
Daughter of Alzheimer’s Patient Vanderbilt University
Death
P A T T E R N S P A T T E R N S
E V E N T S E V E N T S
Patients cannot afford
treatments
Underdiagnosed P.O.C
Overwhelmed caregivers and
patients
S T R U C T U R E S S T R U C T U R E S
M E N T A L M O D E L S M E N T A L M O D E L S
Iceberg Model
Insufficient Insurance
Coverage
Lack of Guidance for patients and
caregivers
AD diagnostic tests are non-inclusive towards
P.O.C
Stereotypes and biases against AD
Insurance coverage does not include
AD aftercare
AD viewed for the elderly (younger
populations also susceptible)
Other illnesses overshadow AD
Knowledge Gaps with the
progression of AD
Physicians hold off testing for AD in
younger people Uninformed youth towards Alzheimer’s
Testing Cultural
Incompetence
with doctors
P A T T E R N S P A T T E R N S
E V E N T S E V E N T S
Overwhelmed caregivers and
patients
S T R U C T U R E S S T R U C T U R E S
M E N T A L M O D E L S M E N T A L M O D E L S
Lack of Guidance for patients and
caregivers
Stereotypes and biases against AD
Other illnesses overshadow AD Knowledge Gaps
with the
progression of AD
Cultural Incompetence
with doctors
Problem Factors as Causal loops
Disparities in the US Alzheimer’s Care System
Lack of awareness in behavioral health
symptoms
Insurance coverage barriers
Difficulty managing
disease
Knowledge Gaps Within Preventative
Care
Alzheimer’s Symptoms are Overshadowed by Other Physical
Disabilities
Poor lifestyles Physicians provide unspecific
diagnosis of “dementia”
Family Concerns
Distrust of Physician diagnosis
Failure to follow physician directions Increased symptoms
and dementia progression
Medical Laboratory tests require additional costs for
patient family
Late return to doctor’s office results in exponential damage Lack of awareness for
Alzheimer’s
Loss of cognitive abilities or memory is just a natural
part of aging.
Less willing to be part of research and clinical
trial programs Distrust from non-white
population towards medical system
Fewer non-white patients are eligible for drugs that
delay Alzheimer’s progression
Lack of inclusion of diverse subjects in research programs
Lack of understanding of biological differences in
non-white and white patients More non-white
patients being undiagnosed or only
received late diagnosis
Medical Test Costs
Behavioral Health Symptoms
Awareness of Alzheimer’s
Disease
Research Subject Diversity
Less involvement in research and
clinical trial programs
Underserved patients distrust
the medical system
Fewer POC patients are eligible for drugs
that delay Alzheimer’s progression Lack of inclusion
of diverse subjects in
research programs
Lack of
understanding of biological differences
in non-white and
white patients P.O.C patients are undiagnosed or
receive late diagnosis
Research Subject Diversity
Causal loop 1:
Elisabeth Dykens, PhD
Professor of Psychology and Human Development
Vanderbilt Kennedy Center Mary Kate Schroeter, MSA
Humanitarian Advisor United States Agency for International Development
Family Concerns
Distrust of Physician diagnosis
Failure to follow physician directions Increased
symptoms and dementia progression Late return to
doctor’s office results in exponential
damage
Cost for Medical Tests
Causal loop 2:
Physicians provide unspecific diagnosis of
“dementia”
Medical Laboratory tests
require additional costs for patient family
Brett A. Parker, MD Neurologist
Ascension Medical Group
Behavioral Health Symptoms
Causal loop 3:
Causal loop 3:
Lack of recognition of behavioral health
symptoms
Insurance coverage
barriers
Difficulty managing
disease
Awareness of Alzheimer’s Disease
Causal loop 4:
Knowledge Gaps Within Preventative
Care
Alzheimer’s symptoms are overshadowed by
other Physical Disabilities
Continuation of Poor
lifestyles Lack of
awareness for Alzheimer’s
Loss of cognitive abilities or memory
perceived as a natural part of
aging.
Clinical Research Disparities
Public Awareness
Disparities
Gap Change
Patients under 65 qualify for Medicare but are not covered for
behavioral health medications;
they exhaust their resources and are left financially
disadvantaged.
Significance of behavioral needs for patients under 65.
Levers
Adjust Medicare coverage for
patients under 65 with Alzheimer’s.
Health Insurance Disparities
Levers of Change
-Medicare only covers behavioral specialist visits-
Gap Levers Change
Prepare a competent workforce to care for culturally and racially diverse
elderly population.
Clinical trials subject diversity.
Different racial and ethnic groups receive healthcare
differently.
Physicians and
researchers diversity.
Establish regulatory requirements to recruit and retain participants for
diverse clinical trials.
Health Insurance Disparities Disparities
Clinical Research Disparities
Public Awareness
Disparities
-Diagnostic tests developed with mainly AD white patients-
Gap Levers
Shift cultural perspectives of minority populations.
Establish research outreach programs to bridge knowledge gaps on Alzheimer’s.
Establish disease advocacy alliance across geographical (urban/rural)
communities.
Distrust in the medical system from historical
context
Identify community-specific public figures and collaborate with NGOs
awareness programs.
Mobilize
government resources to support underserved
patients.
Public Awareness
Disparities Clinical Research Disparities
Health Insurance Disparities Disparities
Change
-NGOs organize conventions, virtual support groups, and helplines-
Clinical Research
Key Insights and Lessons Learned
Connection
Communication
Comprehension
Health Insurance
Public
Awareness
Conclusion
People deserve the courage and knowledge to live
Beyond Alzheimers, and
Beyond Memory Loss.
Acknowledgements
Thank you for Listening!
