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Considerations in Treating Individuals with Alzheimer's Disease From Hmong and Hispanic Cultures

Considerations in Treating Individuals with Alzheimer's Disease From Hmong and Hispanic Cultures

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Considerations in Treating Individuals with Alzheimer's Disease From Hmong and Hispanic Cultures

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  1. Considerations in Treating Individuals with Alzheimer's Disease From Hmong and Hispanic Cultures March 24, 2007

  2. Discussion Overview • Definitions • Evercare and the people we serve • Research • Hmong Beliefs, Values and Preferences • Hispanic Beliefs, Values and Preferences • Key Clinical Issues in Treating Alzheimer's and Related Dementias (ADRD) • Caregiver Study • Case Discussions – Participants’ Experiences & Insights • Evercare Activities to Promote Clinician Cultural Proficiency 2

  3. What is Multicultural Competence? • In General Terms: • Knowledge of various sets of personal/group attitudes, beliefs, values, communication, and behaviors that influence one’s interactive adaptation. This implies an awareness of differences and consistent application of this awareness • In Healthcare: • Practice of appropriate strategies and interventions based on that knowledge 3

  4. Evercare and the People We Serve • Founded in 1987, headquartered in Minnetonka, MN • Division of Ovations, which is part of UnitedHealth Group • Largest national care coordination program nationwide • Serving >120,000 enrollees in Medicare and Medicaid plans in 38 states • Special Needs Plans: nursing homes, community-based (dually eligible, chronic illness Medicare-only, ESRD) • Plans through state Medicaid programs • Hospice & Palliative Care • More than 700,000 caregivers have access to special services via employer work-life programs Ethnically diverse enrollee base 4

  5. Evercare – Who We Serve • 5+ chronic conditions = 2/3 of all Medicare costs • Great suffering & ineffective resource utilization • 50% of people die in hospital outside of Hospice • Poor palliation services • Maybe functioning well, but no reserve secondary to age • Sudden event is catastrophic • Single condition but very high impact, e.g. quadriplegia, advanced Alzheimer’s Disease 5

  6. Evercare’s Approach • Clinical model focused on early detection of potential problems and individualized care. At its heart are Nurse Practitioners and Care Managers. • 500 Nurse Practitioners and 780 Care Managers • Individualized, holistic and “high-touch” approach to providing care management/care advocacy • Orchestrate services, effective integration of treatments, and better communication among enrollees, families, physicians and other health care providers • Continue to pilot innovative approaches designed to enhance health, well-being and functioning of members and families 6

  7. Research • AD and Related Dementias • It is assumed that old-age dementia is present in all or nearly all populations • Literature on dementia in indigenous, traditional non-Western societies is scant • It is also assumed that it is likely to be experienced differently by different cultures • Prevalence is higher in Hispanic American populations than in Caucasians (2x as likely to develop by age 90 – Tang et. Al. JAGS 1999) • It is difficult to ascertain in the US Hmong population since so many died during their exodus from Laos 7

  8. Research • Portion of elders who are white and non-Hispanic will decline from 87% (1990) to 67% (2050) • Demographics will drive cross cultural research on ADRD • Research challenges • Lack of culturally neutral and/or culturally fair cognitive tests, most research hasn’t considered degree of acculturation • Difficulty in evaluating years of education, quality of education and literacy • Despite limitations current research provides valuable information for clinicians treating individuals with ADRD from different ethno cultural groups 8

  9. Hmong Culture, Preferences, Beliefs &Values • The Culture • One of the most homogenous cultural groups in our society • Hmong meaning & identity are linked to the family & clan (18 clans) • Needs of family are more important than those of an individual • Males are decision makers, and male clan leaders resolve disputes within clan, between clan & non-Hmong communities • Elders typically live with their eldest son • General Interactions • Address formally; Mr. & Mrs. Husband’s first name • Handshake with male, nod to female • No touching, hugging etc. by males & females in public • Eye contact is disrespectful • Females very modest & prefer female MD, if a male MD husband must be present 9

  10. Hmong Culture, Preferences, Beliefs &Values • Religious Beliefs • Historically, Hmongs are animists; however a small percentage have become Christians • Animists believe that well being is dependent on harmony between the life & soul within the body & spirits outside the body • Animists believe that people are alive by chance & death takes place by chance • The Shaman is the key to communicating between the spirit world and human world • Health Beliefs • Pain and sickness are caused by imbalances in the spirit world • Spirit possession, soul loss, breach of taboo, physical injury or object intrusion are causes • Non-spirit illnesses can be seen externally & treated by folk practitioners or MD • Spirit illnesses can’t be seen & are treated by the Shaman 10

  11. Hmong Culture, Preferences, Beliefs &Values • Beliefs Related to ADRD - Mary Olson research • We know that ADRD is a normal part of aging – not an illness • Hmongs believe that “Talking in tongues” (talking strangely, beyond death, hallucinations) is viewed as a mental illness (a source of shame) • Elders with ADRD are to be cared for by the eldest son or another son, if the son refused to do so they would be shunned by the community • Nursing Home placement is considered when the elder is very close to the end of life, although death at home is preferable • Decision to make requires all family members to be in agreement & may include the clan’s input • If a person is placed the family must come with Hmong food 3x day • Some Hmongs would allow placement of a nasogastric tube if the elder could no longer eat; others would not because of fear it would remain in the body after death resulting in reincarnation with the tube still in • Advance Directives are not common, end-of-life decisions are made by the family • It would be a disgrace to have the individual die alone in the Nursing Home 11

  12. Hispanic Culture, Preferences, Beliefs & Values • The Culture • The Hispanic culture is not homogenous – there is a great deal of ethnic diversity within the culture • Acculturation varies greatly among the US Hispanic population • Hispanic cultures are usually patriarchal with males making the majority of the decisions; however the females tend to make the day-to-day health care decisions • The family is more important than the individual, and family self-reliance is key • General Interaction • Hispanics often carry the father’s & mother’s last name • Recent immigrants avoid eye contact with individuals as a sign of respect • Physical touch and warm smiles are preferable to handshakes (too formal) • Anyone working with family is expected to invest time getting to know them • Time is very flexible & being late is acceptable 12

  13. Hispanic Culture, Preferences, Beliefs & Values • Religious Beliefs • Catholicism is the dominant religion; however a small percentage are Protestant or Jewish • Belief in an after life is common among Hispanic individuals who are Christian • Health Beliefs • There is a great deal of variance in beliefs about the causes of illness • Some believe that God determines the outcome and that prayer is the best response • Some believe that negative behavior is the cause of illness • Others believe illness is associated with an imbalance between nature and the supernatural • HIV/AIDS, alcoholism and mental illness carry strong stigmas for many 13

  14. Hispanic Culture, Preferences, Beliefs & Values • Beliefs Related to ADRD – from the Hispanic point of view (unless otherwise noted) • Mental Illnesses or negative emotions featuring stress, genes, trauma, nutrition, aging and brain deterioration are all seen as causes of ADRD • Memory impairment is considered a normal part of aging • Diligent caregiving can control or prevent behavioral disturbances and further memory impairment • Dementia is often viewed as a mental illness & source of shame • Family secrets including shame shouldn’t be shared • Caregiving of an elder with ADRD is typically provided by a daughter • Mexican Americans may associate ADRD with shame and avoid seeking services (Gallagher-Thompson study) • If ADRD is viewed as the will of God or the “evil eye” - care may not be sought • Extended family makes end of life decisions – death at home is preferred • Advance Directives are not common 14

  15. Clinical Areas for Interactions with Patients & Families • Mental status or cognitive changes are often first recognized by family members • Delirium often misdiagnosed/undetected • There are reversible causes of dementia that can be treated • Early comprehensive clinical evaluation essential • Recognize and treat depression results in improved dementia outcomes • Ongoing patient assessment is important to provide quality of care, maximize functional performance by improving cognition, mood, and behavior • Ongoing medical/cognitive assessment • Preventive care, early recognition of changes in condition • Caregiver training vital • Planning for future needs critical 15

  16. Evercare Study of Caregivers in Decline • 44 million Americans are caregivers for their loved ones; more than 21% of U.S. households contain at least one family caregiver • 2004 National Alliance for Caregiving and AARP Study: 2.5 million caregivers in fair or poor health • The role of the caregiver runs through all of Evercare’s offerings • Important to find out why their health was declining and what solutions there are to help • Collaborated with the National Alliance for Caregiving • Result: first survey to take a comprehensive look at the impact of caregiving on the health and wellness of caregivers 16

  17. The Downward Spiral 17

  18. The Headline… • Stress and worry of caregiving leads to: • Depression • 91% reported they suffer from depression • 81% said caregiving made their depression worse • Extreme fatigue • Poor eating and exercise habits • Greater use of medications • Misuse of alcohol or prescription drugs to cope • 53% said this “downward health spiral” also negatively affects their ability to provide care If caregivers become too ill to care for their loved one, we have a growing public health issue as our population ages 18

  19. What Can Help? % Very/somewhatlikely to use 19

  20. Clinical Areas for Interactions with Patients & Families • Behavioral disturbance occurs in >50% of people with dementia - agitation, aggression, pacing, wandering, mood disturbances, personality changes, changed sexual behaviors, decreased appetite & psychosis • Stressful for caregivers/ families, great burden • Rule out potential medical causes (UTI, Pain) • Effective interventions exist: behavioral, environmental, and pharmacologic • Identifying triggers for behaviors is important • Ideal environment is familiar, constant, and non-stressful • Train caregivers on successful approaches for behavior 20

  21. Clinical Areas for Interactions with Patients & Families • ADRD behavioral disturbances impact activities of daily living (ADL) • Families/caregivers need to understand prognosis, expect decline in self care of ADLs • Planning for future care needs is critical • Eating and drinking: seen in 92% of patients with dementia, review potential causes and potential strategies to intervene • Toileting: incontinence and constipation common • Bathing and hygiene problems: common, use person-centered strategies to resolve • Gait disturbances: common in advanced stages of dementia 21

  22. Case Discussion What is Your Experience With ADRD in Hmong and Hispanic Cultures? • Has your experience validated the “Culture, Preferences and Beliefs” for the Hmong & Hispanic populations presented today? • What were some challenges dealing with these beliefs and preferences? • How did you use your understanding of the Hmong & Hispanic culture in each of the clinical areas mentioned today? • Are some issues more cultural-dependent than others? • How did/do you learn about the cultures of the patients you treat? 22

  23. Evercare: Addressing Diversity in Daily Practice • Outcome of advisory council info: • Selected top 3-5 actionable items that would help our clinician communicate and serve our diverse customers’ unique needs • Action items appear on the Plan of Care, for example, if our client was of Hmong background, we would consider the following: 23

  24. Evercare: Online learning mandatory for all staff • Online course with activities and post-test. • More than 1,500 employees have completed the course. 24

  25. Online Course Content: Cultures & Topics • Targets most commonly occurring diverse populations. • Addresses some background about general beliefs, health disparities, and health/ illness/end-of-life beliefs. 25

  26. Addressing Linguistic Competency • Educated field on how to access phone interpreters via use of dual handset phones • Sites order phones directly through contracted vendor for OPI (Over the Phone Interpretation) • Call centers use contracted vendor for on-the-spot translations to complete assessments and conduct care management activities • Customer Service and Sales Call Centers equipped to translate calls in 20+ languages 26

  27. Culture and End-of-Life Care: All Clinicians • Purchased interactive training program to train clinicians on cultural considerations when planning/managing end of life care 27

  28. Albanian Native American African Portuguese Cape Verdeen Russian Chinese Somali Haitian Spanish Hmong Taiwanese Korean Vietnamese Muslim (Arabic) Cultural Advisory Groups • Contracted with Language Services Inc. to develop 15 advisory groups using medical translation experts Focus groups gathered to discuss 11 major topics about cultural beliefs about health, illness, end-of-life. Final product: 70+ page advisory report with tips for communicating and caring for people of diversity. 28

  29. FiveWishes®: Advance Care Directives in 20 Languages • NEW INITIATIVE UNDER WAY TO PROVIDE ADVANCE CARE DIRECTIVES • TO ETHNICALLY AND CULTURALLY DIVERSE COMMUNITIES • End-of-life decision-making program translated into 20 languages • Outreach in 38 states through communities, hospitals and hospices • Eliminates barriers to end-of-life decision-making for non-English-speaking members of ethnically and culturally diverse communities 29

  30. Evercare University Intranet Site • Communicating cultural tools, resources and updates to our clinicians via our intranet site: 30

  31. Evercare Internet Site For more information on products and services offered by Evercare, please visit: www.EvercareHealthPlans.com Coming in Summer 2007: The launch of our new Spanish website – www.PlanesDeSalud.com-- a website incorporating the unique needs and culture of our Hispanic populations. 31

  32. Questions & Discussion 32