Racial Health Disparities in Dementia

1. Racial Health Disparities in Dementia DISHA KUMAR ALLEDA MACK SARA OLACK SHARON RUCK

2. Outline • Prevalence of Dementia • Diagnosis and Treatment • Research Participation • Health Literacy • The Family Unit • Disparities in Caregiving

3. Dementia is not just Alzheimer’s Disease • Alzheimer’s Disease is the most common type but there are many others! • Vascular Dementia: caused by any condition that causes poor blood flow to brain (e.g. stroke, diabtetes & hypertension) • Mixed dementia: dementia caused by multiple medical conditions (eg Alzheimer’s & vascular disease) • Other Causes: Lots! • Huntington’s Disease, Creutzfeldt-Jacob Dementia (aka Mad Cow Disease), Normal Pressure Hydrocephalus, Wernicke Korsakoff Syndrome, Mild cognitive impairment, Dementia with Lewy Bodies, Parkinson’s Disease Dementia, Frontotemporal Dementia (e.g. Pick’s Disease)

4. Racial Prevalence of Dementia • Data from 2002 Aging Demographics and Memory Study (ADAMS) sample estimates prevalence of dementia as 13.9% (~3.4 million) among people > 71 y.o. • Prevalence of Alzheimer’s Disease est to be 9.7% • Dementia prevalence increased with age. 5% in 71-79 yo to 37% in people > 90 • Study of patients admitted to nursing homes found significantly higher incidence of dementia in African Americans (77%) vs Caucasians (57%) • African Americans thought to remain in community longer than Whites, esp if impairment is mild to moderate  psychosocial reasons and financial impairment

5. Racial Prevalence of Dementia • Differences in the prevalence of dementia by race is inadequately defined • Majority of studies only compared African Americans and non-Hispanic Whites • Small study in Hispanic/Latino populations found higher rates of AD in Dominican and Puerto Ricans than non-Hispanic Whites • One study suggested African Americans have higher rates than Caucasians for non-Alzheimer’s dementias • ADAMS study found African Americans were more likely than Caucasians to have Alzheimer’s Disease • Some research suggests that African Americans have higher rates of dementia, especially dementias associated with vascular causes, alcohol use and head trauma • Very little data available on dementia prevlence among Asian Americans • No large-scale studies on prevalence in American Indians

6. Delayed Diagnosis in Ethnic Minorities • At referral, ethnic minorities score lower than comparators on cognitive tests, e.g. MMSE, Clinical Dementia Rating Scales • Are minorities being diagnosed later? • Are screening/assessment tools biased? • At referral, Hispanic minorities reported experiencing memory loss on average 3 months longer than non-Hispanic people

7. Reasons for Delayed Diagnosis in African Americans and Hispanics • Perception of confusion, memory loss, and disorientation as normal aspects of aging • Lack of information about dementia and diagnostic and intervention services • Structural barriers to diagnosis and treatment • Financial • Linguistic • Transportation • Immigration status

8. Areas of Progress • A meta-analysis showed no significant differences in duration of memory loss among white, African American, and Korean American ethnic groups • African American and white patients who screen positive for dementia are equally likely to agree to a diagnostic assessment

9. Disparities in Treatment • Cholinesterase inhibitors (ChEIs) are the mainstay of treatment for mild to moderate Alzheimer’s disease (AD) • ChEIs modestly slow the rate of cognitive decline in AD • Meta-analysis of 3 large studies found that African Americans are 30% less likely than whites to be prescribed ChEIs • Hispanic patients were no less likely than whites to be prescribed CHEIs

10. Disparities in Treatment • Minority ethnic patients are more likely than whites to discontinue ChEIs after 6 months of treatment • Was discontinuation initiated by the patient or prescriber? What were the reasons for discontinuation? • Memantine is FDA-approved for the treatment of moderate to severe AD • Associated with a modest decrease in the rate of clinical deterioration • African Americans and Hispanics are less likely than whites to be prescribed memantine

11. Disparities in Research Participation • A large meta-analysis of RCTs before 2002 found that 3.6% of participants were from non-white ethnic backgrounds • In a 2004 memantine RCT, 8.9% of participants were non-white • Factors relating to African Americans’ participation in brain research • Perceptions of and misconceptions about research protocols • Racial minorities in medical research • Racial disparities in medical settings • Influence of religion and spirituality • Family history of disease and desire to find a cure • Prior exposure to medical and research settings

12. Health Literacy in the Elderly • Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” • Apprx 50% of Americans (90 million) have poor health literacy • 30% of adults >65 have below basic health literacy; have lower literacy scores than all other groups surveyed • Functional Health Literacy test scores decrease 1 point for every year increase in age

13. Effects of Health Literacy on the Elderly • Pts with low health literacy less likely to receive preventive health services • Increased fear and confusion • Low health literacy predicts overall mortality and cardiovascular mortality for pts >65 • Low health literacy more common in elderly w/ chronic medical conditions (i.e. dementia)

14. Effects of Health Literacy in the Elderly • Elderly with poor health literacy less likely to have PCP, insurance, or vaccinations • Health literacy may be a better measure than education of elderly pts’ ability to understand health information • Elderly have greater need for complex disease management and decision-making, coupled w/ risk for cognitive slowing and functional decline • Higher risk for poor health outcomes

15. Costs of Health Literacy • Low health literacy costs $106-238 billion/year • 80% of seniors have at least one chronic medical condition; demands on health literacy increase with each chronic condition • Costs of chronic conditions expected to be $1 trillion by 2020

16. Role of The Family Unit in Caring for Ethnically Diverse Dementia Patients • Health-care providers often rely on ethnic minority to act as “informants” when treating dementia patients • The family members are not the focus of treatment even when they are distressed • Non-English speaking family members are often used as translators • Understanding family dynamics is essential in this population! • Key family members may live far away  may delay diagnosis/treatment • May underreport memory and behavioral problems of demented family member • Ethnically diverse caregivers tend to experience higher levels of family conflict vs Caucasians  more family members involved in decision/care process • Ethnic minority caregivers may be reluctant to admit distress related to caregiving

17. Family Caregiving • Over 43.5 million caregivers (19%) over the age of 18 provide unpaid care for a parent or friend > 50 years old • Average age of caregiver -50 year • Average age of recipient - 77 yrs • Number of caregiving years – 4yrs • Decrease in the number of paid caregivers with an increase in the number of caregivers providing more of the care • 43% of caregivers did not feel they had a choice in taking on this role

18. Faces of Caregivers • Female (67%) - 50 years of age • White (76%) • Married (59%) • Caring for one person (70%) • Assisting a relative (89%) who is most often the caregiver’s mother (36%) • Providing 19 hours of care in an average week • Employed while caregiving (55%)

19. Family Caregivers • 83% of caregivers with an annual income of $50,000 or more are/were employed while caregiving, compared to 67% of those with an annual income under $50,000 • 61% caregivers currently work full-time (50%) or part-time (11%).

20. Hispanic Caregivers: 10% • Average age 43 years –significantly younger than White or African-American caregivers • Annual income < $50,000 – 56% • Report they need help balancing work & family responsibilities-39% • 66% have never gone to Internet to look for information on CG • Caregiver tax credit identified as most helpful public policy

21. African American: 10% • Average age 48 years • More likely to be single-never married – 28% • Annual income <$50,000/yr – 59% • 70% rarely or never gone to Internet to look for information of caregiving resources • Support the use of a $3000 tax credit for caregivers

22. Asian American: 2% • Equally likely to be male or female • Married -58% • Highly educated – 40% college graduates • High annual income

23. What People Want I am going to read you a list of things that policymakers are proposing to help caregivers like yourself. Please tell me which one you would find/have found most/second most helpful, regardless of whether or not you have used it already?

24. In a Perfect World • A caregiver tax credit of $3,000 - 53% • Respite services, where someone would take care of your [relation] to give you a break – 29% • An outside service to provide transportation for your [relation] – 25% • An assessment of your capabilities and needs to connect you with needed services – 19% • A voucher program where your [relation] could pay you minimum wage for at least some of the hours you spend caregiving – 27% • A partially paid leave of absence from your work for 6 weeks – 15%

25. What Are the Options? • Private Pay Caregiving Services • Family • Community Care Program through the Department on Aging

26. Private Pay • If agency is licensed and bonded caregivers cost $15-$22/hour or $190 or more for 24hr/day care in western suburbs • Monthly cost $5600 plus food, household expenses etc. • Minimum of 2-4 hours • May or may not be a benefit of a Long Term Care Insurance Plan

27. Community Care – Dept of Aging • Homemaker services – Maximum of 35hrs/week • Adult Day Services • Senior Companion • Emergency Home Response Service

28. Qualifications for Assistance • Assets less than $17,500 • Age 60 or older • Determination of Need • Mini-Mental Status Exam • Resident of State of Illinois, U.S. Citizen or legal alien

29. Our Recommendations • Prevalence Assessment: • Data suggests there are racial disparities in prevalence of dementias after correcting for variables like sex and gender but is inadequate • Studies need to focus on defining prevalence of dementia by race and ethnicity • Racial and ethnic prevalence of dementia types should be defined in both the community and nursing homes • Can inform resource allocation to ensure patients are receiving appropriate care • Treatment and Diagnosis: • Development of non-biased screenings tools • Better pharmaceutical insurance coverage (meds are expensive)

30. Our Recommendations • Health literacy: • Improve doctor patient communication (e.g. teach back method) • Multi-disciplinary interventions to assist elderly with poor health literacy to allow for easier access • Ensure large print publications are available to the all patients • Community resources (e.g. classes and education) exist and information should be shared with patients

31. Our Recommendations • Caregivers: • Identify key family members involved in the decision making process and include them from the beginning • Inquire about and understand the family dynamics as much as possible • Use medical translators with non-English speaking patients • Do not assume caregivers have internet to access and proficiency (limits ability to access) resources. • Give information on caregiver support groups to patients and their caregivers • Continue to engage caregivers to assess their needs

32. References Baker DW, et al. The Association Between Age and Health Literacy Among Elderly Persons. J Gerontol B Psychol Sci Soc Sci, 2000. 55(6): p.S368-374. Baker DW, et al. Health Literacy and Use of Outpatient Physician Services by Medicare Managed Care Enrollees. Journal of General Internal Medicine, 2004. 19(3): p. 215-220. Birks J. Cholinesterase inhibitors for Alzheimer's disease. Cochrane Database Syst Rev. 2006 Jan 25. Chin AL, Negash S, Hamilton R. Diversity and disparity in dementia: the impact of ethnoracial differences in Alzheimer disease. Alzheimer Dis Assoc Disord. 2011 Jul-Sep;25(3):187-95. Lambe S, Cantwell N, Islam F, Horvath K, Jefferson AL. Perceptions, knowledge, incentives, and barriers of brain donation among African American elders enrolled in an Alzheimer's research program. Gerontologist. 2011 Feb;51(1):28-38. Gelman CR. Learning from recruitment challenges: barriers to diagnosis, treatment, and research participation for Latinos with symptoms of Alzheimer's disease. J Gerontol Soc Work. 2010 Jan;53(1):94-113. Howard DH, Sentell T, Gazmararian JA. Impact of Health Literacy on Socioeconomic and Racial Differences in Health in an Elderly Population. J Gen Intern Med 2006: 21:857-861. National Alliance for Caregiving in Collaboration with ARP (2009). Caregiving in the U.S. – a focused look at those caring for someone age 50 or older-Executive Summary. www.caregiving.org. National Center for Education Statistics, The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy. Washington, DC: U.S. Department of Education, 2006.

33. References Perryman M, Lewis M, Rivers PA. Treatment disparities in medication prescribing for Alzheimer's: disease among ethnic groups. J Health Care Finance. 2009 Summer;35(4):64-73. Parker RM, Ratzan SC, Lurie N. Health Literacy: A Policy Challenge for Advancing High-Quality Health Care. Health Aff, 2003. 22(4):p.147-153. Rodgers WL, Steffens DC, Willis RJ, Wallace RB. Prevalence of dementia in the United States: The aging, demographics, and memory study. Neuroepidemiology. 2007. 29 (1-2): 125-132. Sudore RL, Mehta KM, et al. Limited Literacy in Older People and Disparities in Health and Health Care Access. J Am Geriatr Soc 54:770-776, 2006. Vernon J, T.A., DeBuono B. Low Health Literacy: Implications for National Policy. 2007; Avaible from: www.gwumc.edu/sphhs/departments/healthpolicy/chsrp/downloads/LowHealthLiteracyReport10_4_07.pdf. Weintraub D, Raskin A, Ruskin P, Gruber-Baldini AL, Zimmerman SI, Hebel JR, German P, Magaziner P. Racial differences in the prevalence of dementia among patients admitted to nursing homes. Psychiatric Services. 2000. 1259-1264. Yeo G and Gallagher-Thompson D. The Family as the Unit of Assessment and Treatment in Work with Ethnically Diverse Older Adults with Dementia.. Ethnicity and the Dementias. Second Edition. Routledge 2006: p119-124. 10 Types of dementia that aren’t Alzheimer’s and how they’re diagnosed http://www.caring.com/articles/types-of-dementia

34. Questions?